Thursday, August 2, 2007

Prayer/Religion/Spirituality

I've started this post and set it aside many times.

My wish is that we all can have an honest discussion about how having a child born premature (or the loss of a preemie) has changed our views on prayer/religion and spirituality.

My fear is that the discussion is going to turn nasty and unproductive.

I'm willing to give it a try.

My thoughts...

I was raised Catholic, even going to Catholic school for bit. I began to question organized religion very early on. I can recall a conversation that I initiated when I was 10 and was told that I was too intelligent and, "you just have to have faith." If someone had actually sat me down and had an educated discussion, I may not have strayed.

As I got older (teens) I started to feel guilty for the feelings I was having. Oh that Catholic guilt! Again I approached people who should have been able to help and again was told to have faith.

In my early 20's I did some honest soul searching. Now on my own, I no longer was forced to attend church. I started reading about other religions but nothing seemed to fit. I really felt lost. It's hard to explain but others who have been there will understand.

Then my water broke at 23 weeks. I was 30. I immediately reverted back to prayer and a whole lotta begging to God. People were calling me in the hospital and telling me that they were praying too. Prayers chains were linking all over the country, all for my child.

Some told me, "if you pray hard enough, everything will be ok."

When Paige was born I immediately felt that I must not have prayed enough. And, I surely must not be worthy. What a horrible feeling to have as I was laying on the operating table!

The next day, while my precious baby (whom I still had not seen) was fighting for her life in the NICU, one of our dogs died. He was my first baby. I had been separated from him for almost 3 weeks due to being on hospital bed rest after my water broke. My MIL called the nurses station and the nurse pulled hubby out of my room to tell him. He was crying when he came back in. I thought for sure we had lost our child. When he told me that it was our dog, I swore, out loud-at the top of my lungs, at God. That guilt was too much to bear. What a cruel chain of events.

During her NICU stay, people prayed over her. When she would pass a hurdle, they would claim that God was at hand and had spared her. What was the excuse when she would have a setback? Where was God then?

Why is it that God gets the credit for good things but is spared the credit for the bad?

Over the years I have struggled with my feelings regarding "God". It has not been easy to feel this way. I've tried searching for something that will bring me back, but just keep on coming back to the same place....

Was the theory of "God" just created by humans? Why would a person who has the ability to stop pain, actually allow our children to suffer?

I do hope we can all have a civil discussion. So many are passionate about their beliefs that sometimes that passion came come across as rude.

Before you type a comment, do so from this perspective... The comment you leave could help someone who needs help/direction. If you are nasty, you will only drive people away. Instead of simply quoting the bible, please talk about YOUR own personal feelings.

Lastly, if this discussion gets out of control, I will shut it down. Many parents are very vulnerable right now, struggling with all facets of prematurity. They surely do not need to feel attacked for how they are feeling or what they may have gone through.

148 comments:

Lori said...

Stacy,

There are two great books which might be useful to you or others. Both are by Phillip Yancy. One is _Where is God When It Hurts?_. The other is about prayer, but I can't remember the exact title at the moment. Both address the questions/doubts you raise in your post.

Lori

The Preemie Experiment said...

Thanks Lori. I searched and found his website. If anyone is interested you can see the books here...
http://www.philipyancey.com/

Hope all is well with you Lori.

Stacy

Anonymous said...

My relationship with God took a BIG nosedive when I had my twins at 24 weeks. I knew I had done several things wrong during my life but surely I didn't deserve this as punishment. I just shut down..
I know people think saying *it's in God's hands now" and "well God has a plan for everyone" but they really don't help much when something like this happens.. but I understand where it is coming from with them. My relationship with religion may never get back to where it was before, but I'm okay with that now. I don't think I was punished anymore, but I also don't know if I believe there is a God who would let one of my babies die either.

Sarah said...

Thanks for your thoughtful post Stacy. Let me first say that I am agnostic. I respectfully do not participate in organized religion because I, personally, have been unable to find a religious truth that has satisfied me. I do however respect that others have come to find their own truths.

That little qualifier out of the way I must say I did find myself searching for something "other" during Jack's NICU stay. I have a degree in Theology and another in Philosophy so it's not like I haven't gone down this road before. But I felt compelled to find something, anything that I could hold onto.

There was one particularly bad night for Jack, the night he was intubated and desatting into the 40s, when I put my hand on his head and I wished, hoped, maybe even prayed a little... to a concept that I don't believe in. And the next day he was satting in the 90s.

Coincidence? In my skeptical mind, absolutely. But did it make me feel better in that moment, absolutely.

I think religion in the NICU has its place, it can bring comfort and solace. BUT like all personal choices it can't and shouldn't be forced on anyone else.

The religious quotes that have been filing up your comments section lately have been quite off-putting to me. There was a recent(and infuriating) reference to the fall of man and how that fall resulted in pain for my beautiful baby boy. That's patently ridiculous and literal to the point of well, not being very intelligent.

Future of Hope said...

Wow, what a topic. I am going to be following this discussion with great interest. I wish I had something substantial to add, but the truth is I have many more questions than answers. My Father is a Methodist Minister, and I have been raised in small southern churches. I had doubts about organized religion long before I had kids. The politics and the daily ins and outs of churches have precious little to do with God,in my opinion. But I still felt a connection, I still had faith of a sort.

And then came my son - first his premature birth, then the IVH - then the agressive ROP. All of this followed by the dx's of Spastic Quad Cerebral Palsy, then Legal blindness, then the emotional/sensory issues, followed by ADHD/ODD. The latest to hit showed up years after we thought we were "safe" from further complications. He had his first Seizure (Grand Mal) at the age of 8. Exactly where is God???? What has my child done to deserve this???? I have had many people over the years make the comment that My son is a "Special Child of God" and that "everything happens for a reason".I am supposed to "Give everything to God" and "trust in his master plan". Sorry, no dice. IF this is indeed all a part of God's plan, then I want no part of it! It is cruel, and mean-spirited.

I think, underneath it all, that I still have belief - but I no longer have Faith. I belive that God owes me answers, and he owes my son an apology.

Anonymous said...

This happened the day after my boys were born. I had been awake for more than 24 hours, just had a csection at 27weeks and it was palm sunday. I am really not religious but was brought up Catholic and graduated from a Catholic high school. Anyway a very old nun came into my room that morning a little before 8am. She said that she knew I had my boys and wanted to know if I wanted a palm leaf and did I want to pray with her. I said sure why not, they need all the prayers they can get. Then before we started praying she asked if I was married to which I replied yes. She then asked if we had gotten married in the Catholic church, which I told her we didnt. She made a face, threw down the palm leaf and walked out. I was furious. I was in a Catholic hospital and had been visited before by the nuns there. I called the nurses and they said that she doesnt pray with anyone who isnt "really" Catholic. If I wasnt on the fence before I was totally over the fence and on the other side by then.
She came into the NICU many times and would always pass us by. I complained to the head nun and she apologized but did point out that I wasnt truly Catholic.
So I guess I have been banished. Oh well, they already have enough problems.....

terri w/2 said...

Anonymous above: I was raised Catholic as well, attended Catholic elementary school - got married in the church. .blah blah blah. Then my girls were born at 25ish weeks. I was in the hospital for TWO DAYS before the delivery, and made it clear multiple times that I wanted them baptized as SOON as they were born. The chaplain even visited and it was written in the chart.

When delivery time came, my then-husband followed one of my daughters to the NICU and a priest was waiting at the door - my husband told him we wanted her baptized ASAP. The priest then began quizzing my husband - how long had we been married, what church do we belong to, and other outrageous things. My husband completely came apart at that point and said "we just want her baptized before she dies". .my husband's mother came over to see what the commotion was about between the priest and my husband and to find out why my husband was suddenly crying. .

When I found out about this, I was FURIOUS. I vented about it to one of the OB nurses who went to the head chaplain (a nun) who came and apologized profusely. Interestingly, the priest never did apologize to us.

I think this was my "straw" in letting the Catholic religion for the most part slip away from me.

Chris and Vic said...

Strong feelings . . . I, too, have strong FEELINGS about religion/spirituality. And we all need to give credence to our feelings.

For myself, when I am done venting my feelings about religion, ministers, priests, nuns, etc., here is what is left:

Do I feel loved?

How did I learn to love my family, my children? Where does my love of my child/children come from?

If you or I answer by indicating that we gravitate towards love, that we feel loved, that we are able to give love, then that is the influence of altruism, or the influence of a higher power or God.


In addition, if we believe that there is a master plan, and that even suffering and the problem of evil in the world, could somehow fit into a master plan (even if WE cannot figure out how it fits), then we must ask who is the master planner.

If we acknowledge the human condition as frail and fragile, with no guarantees of anything . . .

If we see ourselves as part of the natural laws, laws which sometimes seem quite harsh---what with survival of the fittest and all . . . then we begin to see, though it be through a glass, darkly.

Yes, I think there are more questions than answers. Yes, we must grieve and kick against the goad when our kids suffer and die. Or when bridges buckle for no apparent reason. Or when our elders drift away in a fog of dementia in a nursing home. We must ask "Why?" and struggle with answers and lack of answers . . .

I am all for keeping an open mind towards the existence of God, towards the origins of good and altruism in the world.

And I find that there is something inside me--a conscience? a voice?
---that points me in the direction of doing good and inspires me; and allows me to see beauty in nature as a gift. That makes me believe that I am loved and given gifts as often as I am plunged into grief.

Vic just finished his 4th day at his annual camp Raspberry Hill, Sullivan, WI, for kids with disabilities. Instead of it being a glut of sadness, a sea of kids with disabilities, it was an overwhelming glut of voluntarism and joyously adjusted expectations for kids who cannot do it all, or cannot do very much at all. Everybody was knocking themselves out for the kids to have a good time---kids in chairs, walkers and orthoses were climbing the rock wall, f'r goodness sakes!!! Three volunteers held kids with no postural tone on the back of the horses . . . It was way cool. Everyone was happy at camp---altruism abounded. Every kid had a one-on-one buddy who was at his/her service for the entire time. I heard a volunteer buddy say, "Tell me what to do. I'll do anything" in response to a 10 year old girl who had her period and needed cleaning up . . . Like I said, WAY COOL.

There is good in the world and it came from somewhere. And yes, our kids suffer and are out of the mainstream. But we win some, too, even as we feel keenly that we have lost some . . .

Chris and Vic

Jenn said...
This comment has been removed by the author.
Jenn said...

(Whoops! I accidentally deleted my comment)

This is such a tough topic. I have always been very religious, raised by parents with strong faith in God. So when my son was born at 23 weeks, for me it was the most natural place to turn.

I realize not all believe in a God, and so I say this with the utmost respect for those who do not share my beliefs.

I went through every feeling there is, including rage and anguish of the purest kind. But in my quietest moments and in my greatest sorrow, all I can say is that I did not feel left alone.

I did not receive answers as to why this was happening--but I did feel as if I was being watched over. People call it many things--a higher power, an inner voice--God. For me, it's God.

I just felt a definite presence of love and peace. Cliche? Sure. But that is what happened.

So to answer your question, my faith and belief in God was strengthened through this experience--not because my son was fine (he wasn't) but because I felt God's presence in my life in a way I had never before.

I realize others would call it something else--and that is fine. This is my truth and it works for me.

Anonymous said...

I never got mad at God for not letting my twins live. I had already been a nurse for a long time when I had them, and if I had gotten angry at God everytime one of my faithful Christian patients died an untimely death despite prayer, I would have burned out a long time ago. So I did not go into my situation with the expectation that prayer or my Christian faith would mean my children would be spared.

What got me was a feeling of a devastating absence of His presence. When I look back on the situation years later, I know I saw His face most strikingly during that time in the kindnesses of several people, most of whom did not share my particular religious faith. Most of the Christians were so sure God would do all the healing, they didn't bother to reach out much themselves.

I do believe in God and I believe He shows himself through our actions of love to each other. When we humanize God, we see not a wish granter, or a Santa God, but a servant. So my faith is probably stronger. What I can no longer stand is to go to church. I feel years older than whoever the minister or priest is.

sce

Helen Harrison said...

My parents emerged from fundamentalist Christian upbringings (Southern Baptist and Penticostal Holiness) to become devout agnostics.

I was brought up accordingly.

Which isn't to say I had a non-religious upbringing -- quite the contrary. My parents felt that religious instruction was a vital part of cultural literacy and personal development, and every Sunday my siblings and I got to choose a church to visit, and a religion to study. We ran the gamut from Catholicism to Conservative Judaism, with all the Protestant sects in between; and then there were my parents' Hindu and Buddhist friends!

At one point (age 8)I decided I wanted to be Jewish -- my best friend was Jewish, and I desperately wanted to go to Hebrew School, so I could crack the code my friends had taken to writing in. My parents were fine with this, until I asked my mother to start keeping a kosher kitchen.

Then my father was killed in plane crash. My mother remarried (an even more ardent freethinker) and we moved to the Bible Belt South.

There, I attended an Episcopal day school, (but read Bertrand Russell and William James by night). I was particularly taken by James' _Varieties of Religious Experience_, and still am.

In the South, I had to keep my thoughts secret. For the first time, I came to learn and really appreciate the totalitarian nature of so many belief systems. (I also had to stifle my beliefs in Civil Rights.)

In 1970, my husband (who became a freethinker at age 10 after actually *reading* the Bible) and I were married in the Episcopal Church, to please his family. And although we are not church-goers, we *do* continue to observe some important Episcopalian traditions, for example, cocktail hour.

When our son was born prematurely, we were not unprepared (philosophically) for tragedy. We knew that it happens, and we had no reason to believe that we were "special" or had any sort of Divine protection. We didn't feel the need for religion then, or now. Contrary to popular belief, here are non-theists in foxholes!

I suspect our views and feelings were the result of our upbringings and early experiences and the diverse perspectives they brought.

I do value religion for the incredible motivating and organizing influence it has had on art, architecture, literature, and music, and, with mixed results,on human behavior. I've seen it transform lives, however in both good and bad directions.

I saw a bumper sticker today that said something along the lines of "Those who induce us to believe the preposterous, can also make us do the atrocious." History bears this out, and until I have better evidence, I'm not comitting to faith-based *anything*.

But I remain deeply interested in spiritual and "supernatural" experiences -- why we have them (and I have had them) and the workings of dopamine, oxytocin, and temporal lobe epilepsy

And then there are also the issues love and altruism, which I feel have been well-explained, in a non-theological way, by Robert Wright in _The Moral Animal_ and elsewhere.

Other books in my (current) reading list include Sam Harris' _The End of Faith_, and _Letter to a Christian Nation_, Richard Dawkins' _The God Delusion_, and Christopher Hitchens' _God is Not Great_.

I also recommend the "Beyond Belief" conference at http://beyondbelief2006.org/Watch/

Anonymous said...

I'm so sorry and saddened that so many have had such cruel encounters with the church and believers. Christianity of the bible, Jesus of the bible was loving and welcoming to all who called on him. He was a servant, he was a healer, but more than anything he gave his life so that other would live. You see this world is not our home, it's only temporary, and one day believers will be united in Christ and made whole. No more pain, no more death.

When I went into labor at 22 weeks I prayed for a miracle. I got one, not because I deserved it, or was owed it, or because my faith was better than others, or because I prayed the right things or that many others were praying. I don't know why but I do know that God has used every painful moment of my life to bring me closer to him. To depend more fully and rest more fully in his goodness and love. My baby made it to viability and is now doing well.

I believe in prayer, the answer may not always be "yes" but God can always bring some sort of good out of the bad things that happen, even if we don't see it immediately.

He is a big God and he can handle our questions and doubts, he promises to to never leave his children.

Cling to him, no matter what place you are at in your life, he never changes. He loves our children even more than we are capable of and he promises to hold them in his hand.

Have you heard the song "Praise you in this Storm"? It says it so much better than I ever could.

CASTING CROWNS LYRICS

"Praise You In This Storm"

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Sorry for the long post!

been there said...

The book by Phillip Yancy that Lori mentioned is appropriately called "Prayer, Does It Make Any Difference?" I have a copy, and he presents a very honest discussion. Other books that have helped me in my quest, besides The Bible, are Lee Strobel's "God's Outrageous Claims," and "The Case for Faith," and "The Case for a Creator." Formerly an atheist, Strobel approaches his subjects like the journalist he is, interviewing the experts in their fields. He asks the tough questions.
Personally, my life was near perfect soon after my oldest child was born. He was healthy, and after years of working and saving, I was able to stay home and care for him. Then, before he was a year old, my mother was diagnosed with a terminal illness, which soon was followed by my twin pregnancy that ended three months too soon, which was next followed by my mother's death, next followed less than a week later by one twin's near-death from RSV pneumonia and his rehospitalization, followed by our other twin's many diagnoses of severe disabilities, followed by trying to take care of three little ones at home, plus my aging, unhealthy widowed father and my own disabled brother, and a few years later, my father's and brother's deaths within three months of each other! By this time, we were pretty much broke financially and physically worn out.
For the first time in my life, I learned to depend on God to get me through the next "Tower of Terror" crisis, and somehow, things always worked out, although not necessarily the way I might have preferred. When I was at bottom, I just gave up trying to take care of everything and everybody and let God lead the way.
We had neighbors who helped with our children, a church deacon and his wife who filled our freezer with vegetables, a boss who allowed my husband to change his work schedule for a while, relatives who were in the medical field and helped us sort through the healthcare maze.
After all that, I admit I still complain, rant and berate some of our circumstances and still try to handle crises my way, but I usually end up turning the situation back to God and am amazed at what happens.
I do get upset with well-meaning people who say if you pray, then everything will be all right. I feel God's comforting presence during crises, but I also think He expects others to rise to the occasion and help those in need.

Meredith said...

I'm a huge admirer of your blog. This is a typically thought-provoking post.

I'm an atheist through and through. I suppose one should never say never, but I can't imagine turning to a higher power in times of extreme stress and grief - though I am very lucky not to have faced the terrible things that you yourself and many of your readers have faced.

One of my favourite authors, Iain Banks, put it best in a book called The Crow Road. I've searched the internet high and low for the quote I'm looking for, but will have to wait till I get home and look it up in my copy! Basically it's a father explaining to his son why he does not believe in God, and it's along the lines of how "ridiculous" it is to scream "why me, God" when something goes wrong - when the question should really be "why not me?". Everything is random, and there is no "plan" singling some people out for worse treatment than others. That's the gist of it. There is a twist in the tale in that the same father actually gets struck by lightning and killed later in the story whilst climbing a church tower to shout from the top that there's no God!

These quotes from Albert Einstein encapsulate my feelings very well too:

"I do not believe in a personal God and I have never denied this but have expressed it clearly. If something is in me which can be called religion than it is the unbounded admiration for the structure of the world so far as our science can reveal it."

"I cannot imagine a God who rewards and punishes the objects of his creation, whose purposes are modeled after our own -- a God, in short, who is but a reflection of human frailty. Neither can I believe that the individual survives the death of his body, although feeble souls harbor such thoughts through fear or ridiculous egotism."

"I do not believe in the immortality of the individual, and I consider ethics to be an exclusively human concern with no superhuman authority behind it."

"If people are good only because they fear punishment, and hope for a reward, then we are a sorry lot indeed."

Helen Harrison said...

To meredeth:

I also agree with Einstein :"If something is in me which can be called religion than it is the unbounded admiration for the structure of the world so far as our science can reveal it."

A well-taught biology or physics class inspires more genuine awe in me than any sermon.

Anonymous said...

I do not believe in God and never have. Having my son has tested my parent-in-law's strong faith. I have had many people tell me that the reason why my son has his disability is because of my non-belief. And yet I know that this is not true as there are many other families who have children with disabilities that are far more serious than my sons, except their belief is strong.

terri w/2 said...

Yes, religion in this arena can have both good and bad effects. While some may find comfort, others may feel betrayed. I think that when we had the incident with the rogue priest refusing to baptize my daughter until he knew just what kind of fallible parents we were - I knew that kind of judgement was not the kind of religion I wanted. Religion is suppose to comfort you in difficult times - and we were facing the most difficult times we will probably ever experience and my religion failed me. Interestingly, I feel myself to be very spiritual, just not very "Catholic". My family though is devout.

I do sense God's presence and have had some very interesting spiritual experiences. The people that have been brought into my life as a result of my girls' lives are really phenomenal people. I've realized what is and isn't important in life, and have learned to let go of a lot of things, while at the same time being intolerant of other things (materialism, for instance).

I've felt God close to me many times. I haven't felt abandoned by him/her - but rather abandoned by my religion. I have to agree that I've actually felt closer to God while in the throws of possible neonatal death than at any other time. It was pure, raw emotion and minute to minute survival mixed with sheer terror as many of us know. The terror of living through the neonatal experience is truly life-changing.

Long Term Listener said...

I'll be brief because if I start I am not sure where I'll stop.

So, for me as I went in for my emergency section, I had already asked for a methodist minister to be with my non-believing husband, just in case either I died, my baby died or we both didn't make it through. She,the minister, was fantastic and looked after him, me and baptized my boy the night of his delivety. That gave me so much comfort.

I think we have been really fortunate and that God is in that fortune somewhere.

My husband sees what I went through, sees how my health has never recovered, sees what our son has gone through and goes through and wonders how there can be a God in that.

23wktwins'mommy said...

Where is God? is a question I asked a ton of times during my 23 week twins' 122 days NICU stay. On a couple of occasions I recall screaming at Him in my living room "Please don't take my children!" Who was listening? Is there anyone listening?
I was raised Catholic and attended Catholic school from kindergarten straight through highschool. I even received my bachelors from a Catholic college. (not by choice, rather the private schools have better education where I'm from.) Nevertheless, religion was always thrust upon me. I too was always sceptical. Why couldn't woman be priests? If there was only Adam and Eve, where did everyone else come from? Isn't that incest? Why are people different colors, shapes and sizes if they all came from Adam and Eve? Anyway, organized religion didn't make a whole lot of sense to me, so I kind of remained spiritual and ignored all the "rules."
So when my twins were born at 23 weeks, religion and prayer were thrust back into my life after it had been kind of absent for awhile. Like PE mentioned, there were also prayer chains from all over the country. I was receiving cards in the mail weekly from churches who were praying for Serena and Edwin. It touched me. It gave me a sense of hope in some strange way. When people said "we are praying for them" I felt a tiny sense of calm. Then my son took a turn for the worse. He couldn't come off the vent, his PDA that had closed with meds opened at 3 1/2 weeks of life. He needed surgery but was too unstable. Every attempt at moving him from the Hi-Fi to the conventional vent failed. We were losing him. My world was crumbling. I was put in this position where I had to make a choice. Do we end support, or wait it out? The Catholic guilt came through at some points and said don't give up, you can't take him off life support, God will chose. Then I realized, no, we must chose. As a family, we had to watch our son and see if he was trying to let go. We made him a DNR. A couple of days later he was stable enough for surgery. Our primary nurse had mentioned to my mother on a few occasions she thought it might be a good idea to baptise him, if that's something we believed in. In other words, he's probably going to die, so if you want to do it, do it now. I figured it couldn't hurt, and even though I don't see how he was ever a sinner as an unconscious 23 week baby, I figured it should be done. He was baptised in my arms, and for some strange reason I felt at ease. I cried as the transport team packed him up to transport him to another hospital for surgery, but I also felt like he was going to be okay. I don't know why it made me feel better, and I certainly would never argue baptism was the reason he turned the corner and is now 10 months old and happy as ever. I thought he was going to die, everyone did. I can't say it was God's will that my 23 weekers lived, because what about the babies that die, I can't accept it is God's will that they die...how unfair. But I do know, when I had nothing left, the idea that people were praying made me feel better.
Maybe it is the idea of people coming together for my children's lives that made me feel at ease. I think it was less religion per say, and more of the spirit of humanity that often comes together in times of tragedy that really touched me.

Andrea said...

Preemie Experiment wrote:
"Why is it that God gets the credit for good things but is spared the credit for the bad?"


Stacy, I said these EXACT words to my mother during Dylan's 4 month stay in the NICU. She had some lame response.

I've always had a very casual realtionship with God. Very "Are you there God, it's me Margaret" kind of crap.

When I was in the hospital on bed rest with Dylan (who was 24 weeks), I'd go to sleep every night and say things like "Hey God, thanks for everything."


One night I was about to go to sleep. I was lying in bed and said silently "Dear God, thank you so much for my two beautiful boys." (my fetus and the kid at home)

Then I stood up, went to the bathroom and hemmorrhaged all over myself.

I never prayed once during Dylan's hospital stay. Not a single time. I tried, I swear I did. But every time I tried, I felt like an ass.

And all those prayer circles praying for us? Whatever floats their boat, I thought.

It's been two years. We're still estranged. But I have thought about this a lot and am still working on it. I miss just checking in to say Hi now and then.

And if I go to hell -- well, how much worse could it be than what we've already gone through?

Andrea

twinsx2 said...

I was raised Catholic, Catholic schools, the whole nine yards. I often say that due to being raised Catholic and being fed a diet of the Saints and Martyrs, this is the reason I can deal with my life.

However, I can say that I have prayed and prayed for 16 years and it seems that I received the opposite of what I prayed for. I prayed to get pregnant. No luck. We prayed that the low-tech fertility treatments would work. They didn’t. We moved on to IVF and prayed that for no more than twins. We got triplets. We prayed for a successful pregnancy. On mag at 22 weeks. We prayed that I would be able to stay pregnant until at least 32 weeks. One stillborn at 22 weeks. We prayed that I would not become infected after the stillbirth of one of the triplets. 17 days later, I’m septic and so are the babies. We prayed for no NEC, one got it. We prayed that against all odds we would have a relatively mild NNICU stay and that our children would be indistinguishable from their full term peers. OK, that was a silly request.

We prayed when my husband was diagnosed with Rheumatoid Arthritis that it would be the slow progressing kind. He’s now fully disabled. After getting the cold shoulder from our church and family (this must be our fault-we must not have enough faith-God wants us to be rich and successful-we must be evil), we prayed for guidance if we should have another child so that we would have 2 NTs and 2 disabled. (In the meantime we had a full term girl who is NT-we did not pray during this period due to the “cold shoulders”) It was twins again. I really felt that God was giving me the opportunity to raise typical twins. Both have autism and one was born with congenital renal failure and will need a kidney transplant.

We prayed that I would find employment. Well, I did. But then I prayed everyday on my ½ hour commute to work that I would be given the guidance to be successful and to keep my job. Got fired. (I found a huge fraud case involving a relative of another employee) I prayed that I wouldn’t lose my job over that discovery as well. The firing continues to dog me. I have been unemployed for 18 months. We are on the verge of bankruptcy. We owe more on credit cards than we do on our house. (you know for food, gas, medical bills, etc.)

We know people who go to church with my MIL who send us about $50 worth of food at Christmas. They own a Fortune 1000 company. They feel I “need to be home” so they won’t give me a job. MIL says that if we only knew the people at church who want to help us out and write us a check. Well, what is stopping them? I really don’t want it but… Hey, I’m in still in the church directory, you know our address.

I really want to be one of those people who say that in times of crisis I get comfort from the Bible or praying, but I don’t. Catholics, in my time, weren’t raised to read the Bible. Father told you what you needed to know. So, I did the “read the Bible in a year” thing. I was appalled at what I found in there. It’s a very scary violent book. I can relate to Job in that all of our so-called “Christian” family and neighbors have responded to our crises in the same way that Job’s friends and family did. When we stopped going to church last year, no one called to find out why. My husband was baptized in this church and had been a member for 48 years.

I now believe that there is no personal God. He does not answer prayers; he does not intervene in any way. There may have been some sort of supernatural being who started the whole big bang but he’s not involved anymore. A truly omnipotent being would not “need” our praise and worship. In fact, I think DH and mine’s upbringing may have interfered with making decisions since we were waiting for God’s guidance. It’s up to us to get ourselves out of this mess. God will not rescue us. This was the hand that we were dealt, we have not been playing it well and we need to start.

The Preemie Experiment said...

I'm off in many directions today but wanted to take a moment to say thank you.

Thank you to all of you who have commented. I am proud that we can have this discussion and state our feelings without bashing each other. Everyone has written some very thought provoking words, and so beautifully written too.

Feeling all warm and fuzzy (ok-could just be hormones today),

Stacy

terri w/2 said...

Andrea said: "And if I go to hell -- well, how much worse could it be than what we've already gone through?"

Bingo. You nailed it, girl.

Someone also recently said somewhere on PE's blog about Jesus' suffering on the cross and how our children have suffered so much more. Agreed. I have to say that I had a really really hard time sitting in church during Easter hearing about this when I knew one of my daughters spent 5 months in the NICU having had 500 heel sticks, countless IV's, and neurosurgery without anesthesia only to be left with severe multiple disabilities and massive on-going issues and pain.

Suffering and hell - yeah, been there - it's called neonatal intensive care.

Judy said...

Like many of the others who have posted here, I was raised Catholic. I had 2 miscarriages shortly after I married my husband and found it very difficult to even walk into a Catholic church for quite some time. No one had done or said anything terrible to me, I was just so angry with God that I couldn't be there.

My wonderful devoutly Protestant husband eventually talked me into going back, because he knew how much I missed the ritual and the fellowship. He did not yet realize just how much I missed the Eucharist - which is what eventually drew me back, but it was a long time before I was present in more than body. The pain was just too great.

There followed 2 difficult pregnancies and the births of my older sons, more miscarriages and then the birth of son #3 (no preemies, but they all have significant learning disabilities), nearly losing my husband to coronary artery disease at age 51 and my own cancer diagnosis. I eventually learned that while prayer does not shield us from suffering, it may strengthen us to deal with it. That lesson did not come easily, but eventually I found myself back in the heart of the Church - standing by my husband as he made his profession of faith, was confirmed, and received his first Communion.

If someone had said to me - at any of those difficult points - "you just have to have faith", I'd probably have spit on them. Fortunately, I was surrounded by people confident enough in their own faith that they could listen to my raging and recognize it as pain to be comforted.

I'm so appalled at the way some people have been treated. I've been told that the Catholic hospital where I work is exceptional, and I begin to believe that perhaps it is.

We've always (nearly 30 years) had priests who didn't even ask if the parents were Christian, just if they wanted baptism for their critically ill babies. We have nuns who don't care where you are in your religious journey - they just want to know what they can do to help you along your path. Not everyone meets the standard, but most do - from the cafeteria workers and housekeeping staff to the attending physicians.

You've made me feel very fortunate to work where I do - and very sad that you all weren't treated in a more Christian fashion when you were in pain.

Andrea said...

Terriw/2 --

Although I guess burning in flames for eternity would kind of suck. I guess it depends on your version of Hell.

In my Hell, my children and husband are suffering and I can do nothing about it but watch.

Heaven involves Peanut Butter Cup ice cream, but that's another matter I suppose...;)

Andrea

Sharee said...

We usually acknowledge God when life is falling down around our ankles. That's how it was for me anyway. Always took Him for granted. Never really felt grateful for blessings (air, heat, breath, beating heart ... things like that) and at one time honestly, never took the time to even try to know Him. I always went by what other "more religious" people were saying, but quite frankly ... I didn't feel a thing.

When baby Christopher's skin began to rot on his tiny body and he gasped for breath ... I called on the Lord ... I begged him to spare my son ... I'd do anything (or so I said). Months later, when our second son lay bleeding in my arms, his little chest now still ... I screamed in outrage - HELP HIM!! over and over I screamed. Silence (or so I thought).

Why didn't God help us in our time of need? Why? Why? Why?

In response (much later of course), someone asked a few questions I'll never forget. Questions that changed my perspective and my spiritual direction forever.

She said: Have you done your part? (My part? I wondered.) What exactly have you done for the Lord lately? Do you know what God requires of you? (I didn't know!!!)

So often, we expect to get something for nothing. If one really wants to know more about God, go into it similar to one earnestly searching for a potential lifelong friend (if you don't know where to start, shoot me an email).

We don't curse our friends, nor do we call on them only when we want something very important. We don't ignore them, violate their moral code, avoid opportunities to really know them, ditch 'em when the going gets rough, and we certainly wouldn't end the relationship because we don't understand something (even a life or death "something" ... I said "lifelong friend" guys).

Who wants to entertain conversation (aka prayers) from that kind of "friend"?

Would you?

Anonymous said...

In response to the post above,

before I lost our twins, I cared for the sick, volunteered for the church food pantry, volunteered for an Alzheimer's daycare unit, collected and sorted baby clothes and items for low income moms. I prayed, went to church and worshiped and served God, shared my faith, stood up for my beliefs even when it would make me unpopular, and was truly grateful for my blessings. I was not going through the motions, I really believed in this way of life, and my faith. I was not perfect, by any means, but definitely a practicing, believing Christian. I believe I was in an appropriate place given my age, maturity and life experiences. Yet, the response I got from my pleas to God was much the same as yours.

I don't believe that God did not seem to answer my prayers (either by saving my children, or by being a peaceful, spiritual presence during and after their passing) because I hadn't been "doing my part" But my image of who God is and how He affects our lives has been shattered and rebuilt.

One thing about your post does bother me. You speak of your babies suffering and dying and God not saving them, or answering your prayers as a sort of response to your lack of a relationship Him, suggesting (correct me if I misunderstood) that had you had a prior relationship, had been "doing what God requires", the outcome might have been different. But what about THEM? They were separate beings, not merely your possessions? Would I suffer and die because my MOM did not have a good relationship with the Lord? Is how a baby is going to do after birth, whether or not they are born prematurely, whether or not they suffer, whether or not they die, going to rise and fall by a parents prayers? This hardly seems "fair". God will eventually have to answer to these children themselves, is He going to say, "well, your mom didn't pray, didn't try to have a relationship with me prior to your preterm birth, so I let YOU suffer, whereas this other baby over here, HIS mom and dad had great faith, and so I granted miracles." I just can't see it. Maybe you just meant your feelings about God and your feelings of peace about the deaths of your babies would have been different with a prior relationship with God (such as the family who have recently lost 5 out of 6 sextuplets, with the 6th still in critical condition) That I can understand.

Carrie said...

I was raised Christian - United Church of Christ. I worked many summers as a bible camp counselor.
I started questioned organized religion a long time ago. Both of my children are baptized, but only because of my feeling of respect (guilt) for my mom and my in-laws wishes.
Years prior to my preemie being born, I had pretty much given up any faith. I would identify myself as an agnostic/atheist.
Like TPE, when I was hospitalized for placenta abruption the prayer network kicked in. My mom frequently would tell me that I was hanging on because of all the people praying for me. I was hospitalized at 23 weeks and Max was born at 28 weeks. When Max was born, the network continued to pray and celebrated God's glory when Max was doing well. God wasn't mentioned when he started needing oxygen again and when he got an infection.
God and prayer got a lot of credit for Max coming home 6 weeks before his due date. I think my mom is still giving God a lot of credit for how well Max is doing.
Recently another mom of a preemie said that God didn't save her baby's life to set her little one up for failure. (Failure: being not graduating high school, not living indepently, and having long term health issues) I was quite angry at that comment. My son has hypertension. His hypertension is a result of being born early. I felt her comment meant that God picked my son for "failure."
Having a preemie didn't change my view on religion, but it definately solidified my beliefs, or lack of belief.
TPE, your questions are the same questions I ask.
I sometimes wonder if my feelings of guilt over Max's pre-term birth would have been lessened if I could only believe that God has a plan. I have frequently said to my husband, "This would be so much easier if I only believed in God."

Anonymous said...

She said: Have you done your part? (My part? I wondered.) What exactly have you done for the Lord lately? Do you know what God requires of you? (I didn't know!!!)

I am probably reading it wrong, but to me, this sounds like another case of "if you'd prayed harder, your babies would be OK". Personally, I can't claim I prayed for the 2 weeks I was on hospital bedrest or the 9.5 weeks DD was in the NICU (well, not unless cursing at God counts as prayer) after being born at 29 1/2 weeks. In fact, she was probably 6 months old before I was back in the pew. Yet at 6, DD is as near to "normal" as we have any right to hope for. It sure was not because I prayed hard enough in the early days....

Paula

Sharee said...

Paula ... Tragedies happen to all people ... even Spirit-filled, devout, prayin'-til'-the-sweat-flies kinds of Christians. I'll never debate that. But in these particular situations, I wasn't even trying to live as Christ has taught, but I expected a big miracle. But keep reading for the rest of the story.

Anon 8:24
I began "doing my part" by walking in love and forgiveness ... by building a trusting relationship through prayer, Bible study, praise and worship. I also committed myself unto God ... in sunshine or rain, I will serve the Lord. I chose to stop being a hypocrite (talking one way; walking another), I asked God to fill me with His Spirit and I have never been more full of joy and peace! I am genuinely haaaaaaappppy!

And guess what? When my husband was in Iraq and our THIRD baby died, I didn't turn from God. He held me when friends turned away and my husband was across the ocean. When I cried in despair, He captured every tear and comforted me through the love of complete strangers.

Personally, I would have written the story differently. But thru a foundation of faith, knowledge of His promises and a trusting relationship that could only have been built with my active participation – I persevered. As a result, God has turned my tragedy into a ministry that has blessed countless grieving parents. My experience is not another sad story punctuated by bitterness. It is truly a testimony.

Anon 8:24 You also asked: “Is how a baby is going to do after birth, whether or not they are born prematurely, whether or not they suffer, whether or not they die, going to rise and fall by a parents prayers? This hardly seems "fair".”

I’ll never claim to have all the answers, friend. But I can say that we all suffer (some more than others) … and we’re all going to die. The real questions are: What happens after that? Will 'doing my part' effect my final destination?

A few of your other questions (regarding God’s responses to the babies who lived vs. those who died)… have a simple, very unsatisfying answer: It just doesn’t work the way you’ve described. This one would require a loooong discussion about what actually happens when a person stands (or does s/he even stand?) before God after death.

Another question to ponder: Why doesn’t anybody ever blame that other guy (the one with the pitchfork) for any of our grief?

Helen Harrison said...

Sharee asks:

"Another question to ponder: Why doesn’t anybody ever blame that other guy (the one with the pitchfork) for any of our grief?"

I've always been puzzled as to how God can be all-powerful, and still have to put up with the guy with the pitchfork. This just doesn't make sense to me.

Anonymous said...

Sharee - I know that tragedies happen to everyone. The point I had tried to make was that it sounded to me like you'd been told that praying harder would have made a difference in your babies' outcomes. Our family is a case of that not holding up. I did not (could not) pray for months (too angry), yet DD is doing unbelieveably well. From her really rather uneventful NICU course to her lack of need for therapies to her keeping up just fine in school, the bad stuff never hit. (OK, it was an ordeal for us; I know others would have killed for our outcome.) However, it was not because I or DH had a good prayer life, so it is not like I can claim that prayer in those early months made the difference either way. We did not pray - we got off easy. Others did pray (and were probably better people than us) - still ended up with dead or severely handicapped babies. That holier people than us have it much harder than us is the point that I was trying to make.

Now, if what was meant was, a better relationship with God would make a difference not in a baby's outcome - but in HOW ONE HANDLES IT - well, I think that is a whole other issue entirely. I believe that myself, and am slowly getting to that point. I think it is truly admirable how you have taken your personal experiences and used them to help others. Probably not on the same scale as you, but I have tried to help more myself. Because of my gratitude to RMH for being able to stay there for 9 weeks, I now am a volunteer there.

I don't blame the guy with the pitchfork for my pain here because I don't see how he was involved. My daughter did not choose to be born early and experience what she did. Heck, it was not even MY own choices that led to the situation of having to deliver 2 1/2 months early just save DD's life. I will blame the pitchfork guy later if, through her own free will, DD makes bad choices that lead her astray.

Paula

The Preemie Experiment said...

I was on the go all day yesterday, mostly driving between cities for doc appointments. Sitting in the quiet car (I had both kids with me but they are awesome travelers) I had time to think about this subject some more.

I realized that, for most of my life I truly did not have "faith", I had fear.

Fear is what drove me to church.

Fear is what drove me to not question the existence of God.

Fear is what drove me to not speak about my lack of faith.

Fear is what caused me to cry because I did not have "faith".

A few months ago I found myself searching again. Searching for something that was going to cause me to be overwhelmed with faith. I was still living with the fear that it was me who was not hearing the message. I talked to friends, a lot of them. I talked to people within the church. I sought out people I had met through my blog.

Nothing worked.

I am slowly becoming comfortable with my decision that it is ok to not believe in God. My thought has always been that God was created by the fear of Man. I was afraid of my thoughts.

I am letting go of the fear.

I thank all of you for your comments. I've learned so much from everyone.

Prayer/religion/spirituality... yet another facet of our lives that has been touched by prematurity.

terri w/2 said...

Helen said: "I've always been puzzled as to how God can be all-powerful, and still have to put up with the guy with the pitchfork. This just doesn't make sense to me."

It puzzles me as well!

I read a quote on evil once - wish I could find the source, but it went something like this "the greatest evil is that which appears to be good". .

Naturally, wars in the name of religion come to mind. .along with the horrors of neonatal intensive care for micropreemies.

C & V said...

Someone sent me one of those sentimental religious stories this a.m. This particular story had in it a line about God not liking any of the pictures that people had constructed of him--to old Catholics, that "holy card" look.

Then I read Stacy's post about a God or a religion that was really a fear. And once she stopped fearing, God/religion was able to be let go of, too. This is actually a variation on paragraph #1, where God/religion "looks like" fear, but may be something else.

I melded these two ideas together in my mind with a 3rd concept: we love according to our own definition of love, not according to a standard definition, nor according to the definition of the one we love--NO, we love according to our OWN definition . . .

So, when I add up these 3 ideas, here is what I come up with:

We picture God the way WE picture him, which is pure fabrication--we don't know what he is like. In turn, each of us pictures him (or her)differently, no doubt. It is not surprising then that we disagree about him/her.

Further, we serve him according to what we think he wants from us. Does he want prayer? Does he want good works? Does he want outreach to our fellow man? Does he want us to build architecturally stunning churches? Does he want tithing? (If we want to deny him, we may push the idea of service out of our consciousness as well.)

We may do the good deed (service, altruism) for the wrong reason(s)--out of fear, for example. We may do right because we want a reward--freedom from pain and suffering for our child, for example. We may want to prosper and be free of money worries as a reward for living a good life . . .

I conclude--and this conclusion works for me and me alone--that God is probably not as I picture him/her. And I acknowledge and serve him/her according to MY OWN definition of love and service. God may want something entirely different from me, or s/he may want a succession of different modalities of love and service over time---as in developmental stages of spirituality. But God takes from me what I have to offer, according to my best lights, my developmental stage, my level of consiousness.

The trick is to grow--to go through the developmental stages, and allow that I will see things differently after some time has gone by, and after I have more experience and more wisdom, which improves my vision. Meanwhile, I allow the questionning to go on in my mind and in my heart. Is there a God? Is s/he merciful? Helpful? Does s/he allow evil/suffering in the world? Why? Is there a master plan? Did s/he set up natural laws early on, that allow things to unfold in some kind of predictable way over time--that even suffering and death are a part of this progression? That I am not exempt from the natural laws that seem harsh? That God owes me nothing other than that I am now alive, here at this very moment?

The questionning is rich---to question God and his/her purposes is to acknowledge that there is something, someone, a highter power, a God, a force . . . and I honestly don't think God is unhappy with that kind of acknowledgement. I think it is all okay. It is all good.

Rilke said that we must LIVE OUT the questions . . . and not expect to find the answers. We are ultimately "seekers," not "finders". IMO.

Chris and Vic

Meredith said...

"I am slowly becoming comfortable with my decision that it is ok to not believe in God."

Stacy, not only is it OK to feel this, you may in time find it personally very liberating. It's clearly a mark of civilisation that we all seek answers to the questions that no one can answer, but eventually we evolve to the thinking that there are no answers.

I try to respect all faiths and beliefs, but I constantly run up against the "you don't believe in anything" (esp from my husband, who I would describe as an agnostic - in fact, he probably is more of a Jedi (that Star Wars generation!) than anything!). That is not true, I do believe in many things, but mostly in our rights as human beings and our responsibilities to other human beings.

That is of little comfort in times of extreme pain, though. And whilst I know I could never "believe" myself, I do feel a sneaking admiration for those who take comfort and succour from their religion. When my nephew was rushed into ICU only 24 hours old suffering seizures (he was not prem, in fact 12 days overdue), and everything was touch and go, I longed to give my brother and his wife something more than "I am thinking of you constantly". I said to my brother, who is an atheist like me, that I fervently wished I did have someone to pray too. His wife is a quiet believer and I think it did help her through some of the worst times.

(J was finally diagnosed with a rare epilepsy condition called Wests. Life will always be a battle for him and for the people who care for him. But they are doing OK.)

Helen Harrison said...

I was just talking to a friend about the current blog topic -- religion, finding comfort and meaning -- and was reminded of the following verse:

Malt does more than Milton can
To justify God's ways to Man.

Regina74 said...

Having spent 16 years in Catholic schools, I've had ample opportunities to develop some opinions on God. Having raised premie triplets, I've often revisited those opinions.
1. I don't let religion (mine or anyone else's) interfere with my personal relationship with God.
2. God did not cause nor could God have prevented my children's suffering. The neonatalogists did that.
3. While God is always present in my life, he is not a fortune-teller, soothsayer or an all powerful wizard.
4. Sometimes, I get through the day by reminding myself that God blesses us each in a different way and that while I may not understand the nature of my blessings, or even recognize what they are, I trust that they are there.
Just my thoughts

Helen Harrison said...

Although I consider myself a non-theist, I find myself identifying with some of the thoughts and experiences of people like "Regina74" and "Chris and Vic."

I sometimes think our differences are more semantic than substantive.

Nancy said...

This is a good topic. And I am sure that I am going to be writing it on my blog in a bit.

I don't understand the whole God and special needs kids. I don't understand how me needing to learn something has anything to do with his suffering. I don't know why he had to suffer so I could learn. That has been really hard for me.

I did pray every night in the NICU. I knew that my family and friends were praying. I am not 100 percent sure they were but I know I was praying and HOPING that others were as well. I don't know if it changed his outcome but I do know that he recieved many blessings ( we are mormon) by his dad that I KNOW were beneficial in his survival.

In our religon we believe that in or pre- earth life we "chose" for certain ailments and things to happen. We did it because we knew that was our test or destiny. I am not sure I fully believe that but I do believe that because Tyler has had to suffer so much that he will be blessed either in this life or the next.

I often wonder if my faith is and that lacking. What is faith when it comes to our children? Do we exchange all the times we use HOPE as faith and if we have no hope we have no faith. I don't know the answer to that.

I do have a belief in God and his plan but I have been unsure of my belief in his plan as it pertains to the suffering of a child and MY child in particular. I do know that sometimes it is just that. Its a test.

That said. I do still have a strong faitn in God. In his ability to answer prayers and to direct us. I do believe that he doesnt direct us in ALL things. .That we still have a right to make choices.

Long Time Listener said...

I am not sure about the way that this is connnected, but I think it is to spirituality but I just thought I would share.

My 12 year son does have his own type of belief. He does pray, when he gets told off mostly and he reads his children's prayer book because he likes the power of words and paryers and hymns do hit it home. The current one is 'He who would valiant be 'gainst all disaster'.

However, back to the story: he tells me, in a conversational type of way, that he came down to us as it was his time and he chose us as his parents. But, he also tells me that he left another set of parents in heaven to come to us and that when he dies, he goes back to them.

It may not suit everyone, but it helps him and bizarrely perhaps, I find it comforting even if it sounds naive that he came from a safe place, chose us and will travel back there to safety. I know that it is not everyones way -but you know, when some of our days and nights are so hard, this kind of insight from a 12 year old make it easier. Like all of us, our reality can be hard and tiring and his views shine much needed sunshine and warmth.

The sod of it all? Those parents in heaven are WAAAAY younger than his earthly parents. Wouldn't you know it?

Chris and Vic said...

This may just be a trick I am playing on myself . . . but it makes sense to me and it works for me:

I try to reframe (my) suffering, renaming it "hard work".

I had been a childbirth educator/lay midwife for a while which made me focus on how women perceive labor. Is it 1) suffering, or is it 2) hard work, towards a purpose?

Thinking about labor as #2, hard work with a purpose enables women in labor to keep going, makes them more confident in their ability to cope---I have seen it over and over.

On the other hand, if it is ONLY suffering, all you want is to get rid of it, to take pain-relieving drugs and get it over with.

Likewise, the suffering we undergo, both physical and spiritual, with respect to our kids. Some of our suffering is a sharing of their suffering . . . some of it is directly aimed at us. It is not merely suffering--it is the hard work of learning/accepting the human condition and the master plan and how we may fit in. I feel it is the hard work of soldiering-on.

Our kids suffer physical pain in the NICU, with follow-up surgeries and treatments, etc. Our kids suffer anxiety and panic.

WE share our kids' pain, even their physical pain---I wince, still, after all these years, with every needle-stick. My kid is about to have oral surgery and then major orthodontic work---I literally feel (anticipate, even) his pain.

I have the pain of intense anxiety regarding his future, his medical issues, his own unpredictable anxieties. I have anxiety about finances, related to loss of sleep, related to social acceptance. As we all do. Again, it is not pure, plain suffering. It is hard work, which I can do, and am willing to do, in the hope of coming out wiser, stronger; in the hope of understanding the big picture.
Chris and Vic

Anonymous said...

I have been a Christian for all of my life with the exception of a few, bleak years in college. But my faith has always been an intensely personal and private part of my life, and I rarely talk to other people about it. I don't believe in Missionaries or trying to sway someone over to my way of thinking. Most of my faith comes from the connection I feel when I pray. And over the years, I have learned to not ask for things during prayer because in my experience, it doesn't happen. Most of the time, I simply give thanks for the good in my life or cry over my pain. Most all of the time, I feel contentment and peace wash throughout my body after I pray.

So here is what I believe:

1) Prayer gives me a chance to connect with a source of love and acceptance that I believe is God. 2) I don't believe that Good Deeds accumulate points for blessings, nor do I think that people are "punished" for not doing enough of anything. Some of the most generous and selfless people I have ever known have suffered the most. 3) I don't believe that there is justice, fairness, or earthly reward for being a Believer. 4) There is an entity inside of me that is calmer, wiser and more loving than I am ever able to humanly muster. I believe this is my Soul. 5) Many, many many Religious People are some of the most exclusionary, hateful and cruel people in the world. 6) And finally, I feel so incredibly lucky and honored and thankful for being able to adopt our sweet, little 27-weeker. I don't believe that he is foresaken or being punished or any of that kind of rubbish. I've learned that most everyone I've ever met has some kind of disability, addiction, personality disorder or other hurdle in life. My hope is to teach him how to overcome his own personal challenges and stay in touch with the goodness that lives inside of him.

terri w/2 said...

I just read that a couple of weeks ago, the 5th of the Morrison sextuplets has died. There is no word being released on how the last fetus is doing. Although this couple seems to be deeply religious, I wonder how they are able to make sense of this terrible tragedy.

Anonymous said...

I had been a student of Zen for about 10 years prior to the premature birth of my son. I thought I had increased my ability to accept 'life as it is'...but I was wrong. I could not find comfort in a personal God, giving him credit for sparing my son but not sparing someone else's child. The whole experience left me with an overpowering feeling of helplessness. Like I understood too much but too little at the same time. I have not had the courage to resume my Zen practice since.

kellarsmommy said...

I have read through the comments and have found myself feeling the way several of you do..When I lost my first son Cameron at 20wks, I didn't understand why, I felt like I was being punished, what did I do, was it b/c I didn't go to church everday, I was angry..How could he take my baby that I had prayed so hard for, I shut down totally..Then one day it hit me, I didn't receive an answer as to why Cameron was taken from me, but I felt it wasn't to hurt me..In this time I felt the need to draw closer to God, to try and seek his will out, what did he want me to do? I became pregnant again, this was a rough pregnancy as well, bed rest for 13 wks, ended up in the hospital being flown in labor 3 hrs away from all that I knew, I was scared, yet at peace at the same time..I was sent home in labor, then flown hours later to another hospital, I was told my water had broken and I had to be airlifted to yet another hospital 3 hrs away, I was scared yet at peace...Kellar came at 26 wks..I was unable to go to the hospital that sent me home before b/c they were booked, to me this was a intervention by God, they had sent me home in labor that day w/out ever checking me, and now I am back in the hospital after a 3 hr drive home from there..Kellar went through heck during his nicu stay, but I couldn't quit praying, I couldn't quit begging god to let him be alright..Did Kellar have surgical nec, yes...Brain bleeds? Yes..Severe brain bleeds? yes..a cerebellum bleed? yes...staph infection? yes..ecoli infection? yes...kellar had it all, but I never quit praying, my faith had to be strong...Pain and suffering is not of God, it's not his will for us to hurt..Just b/c God didn't answer my prayers that Kellar would breeze through the nicu doesn't mean that he wasn't there, or that he ever left my sons side...God never promised that bad things would never happen..I agree with oe of the previous post, it's strange how no one wants to blame anything on satan or be angry at him, instead some are angry with god that he didn't do what you asked of him..Most of us have this idea that " well I prayed and God hasn't done what I asked so he must not be real"..God wants more from you than just asking him to do what YOU want, he wants you to depend on him, come to him, develope a relationship with him, not just in your time of need...Seeing where my son was and where he is now is a blessing...When Kellar reaches these milestones that to some are no big deal, to me they are huge and worthy of giving God the praise...

Elisabeth said...

A fetus (or foetus, or fœtus) is a developing mammal or other viviparous vertebrate, after the embryonic stage and before birth. The plural is fetuses (foetuses, fœtuses) or, very rarely, foeti.

In humans, the fetal stage of prenatal development begins at the end of the eighth week after fertilisation, when the major structures and organ systems have formed, until birth.

Terri:

I realize you're just copying Helen, but once the baby has been born, it's no longer a fetus.

The Preemie Experiment said...

School has started this week so I won't have time to comment until things get settled. But, to Elizabeth, who wrote:

"Terri:

I realize you're just copying Helen, but once the baby has been born, it's no longer a fetus. "

Elizabeth, did you have to get nasty? You simply could have stated your definition and moved on. Why bring Helen into this or critisize Terri?

This entire discussion has been beneficial to all. I have received a few emails thanking me for bringing up the topic. Let's keep it nice.

terri w/2 said...

To Elizabeth:

When I first gazed upon my daughters born at 25 weeks, what I saw were fetuses or as you have explained foetuses. (Actually, I thought they looked quite a lot like big frogs, being that they had no butts yet.)

When "birth" occurs four or more months early, I venture that it's safe to say fetus rather than infant, etc. There is no resemblance to a full term plump 7-8 pound infant that can live without massive support. It this makes me a bad person to call them fetus, oh well.

Helen Harrison said...

Dr. William Silverman, considered by many to be the "Father of Neonatology" repeatedly referred to newborn preemies as "fetal-infants."

Anonymous said...

Being raised in the apostolic faith, I have been taught to believe and have faith. I was shocked when I was told that my child may not live, and my faith was shaken. I had been taught of miricals and had seen people in my own church healed of cancer, I never thought my faith would waiver. I Do believe that my child was a mirical from God. I walked through the hard times and believe that god made me stronger for it. Our beautiful daughter was born 6 1/2 weeks early but with no problems. she cam home 3 days after she was born and I believe it was because of all the prayers that were lifted up for her. Although my faith did waver in the beginning I believe if our next child is preemie I will have more faith because of what we went through before. Olivia is now 2 and she has had no problems. I thank God for her everyday..

Andrea said...

Hey Helen, Stacy --

Sorry to break into the conversation but... I'm trying to find mental health resources for parents who come home with preemies. Do you guys know of anyone working in that area or providing that service? Anywhere?

Thanks
Andrea
pantrypuff@yahoo.com

Anonymous said...

)With apologies to the late dear and beloved Warren Zevon - shall title this link)

Send Lawyers, God and Money ....

http://www.cnn.com/2007/LIVING/wayoflife/07/27/livingwell.endoflife.reut/index.html

Hugs,
sheila

Anonymous said...

With apologies to the late dear and beloved Warren Zevon - shall title this link)

Send Lawyers, God and Money ....

http://www.cnn.com/2007/LIVING/wayoflife/07/27/livingwell.endoflife.reut/index.html

Hugs,
sheila

Andrea said...

That was a great link, Sheila, thanks! I can actually use some of those folks for a story I'm doing

Andrea

The Preemie Experiment said...

Andrea,

No one followed up with parents (to check on their mental health) when Paige was discharged 8 years ago. I doubt it's changed much either.

Maybe calling the social worker at your local NICU might get you the info you need.

Could you let us know what you find out??

Stacy

andrea said...

Stacy --

Yeah, we have Easter Seals coming for Dylan. But we've never had anyone ask about us -- about our mental health, depression, need for respite, need for some kind of outlet.

That's why this project I'm working on is so important to me. Parents need that stuff! Why the hell do they ignore us the minute we walk out the hospital door?

But I'm really off track, aren't I?

Sorry :((

Andrea

The Preemie Experiment said...

Andrea,

You are not off track!!

Follow up care (for all involved) is seriously lacking. I think that's why on line support groups are so wildly popular. Where else can we turn?? Who better understands what we are going through but other parents in the same boat.

The "system" is completely overwhelmed that even basic services for the baby is not available in some areas. Birth to 3 programs are full.

A few weeks after my son (barely a preemie at 35.4 weeks) was born I noticed that he hardly used his left arm. I waited a bit and tried not to freak out. A few weeks later I noticed that he still had reflexes that should have been gone. I called our local birth to 3 program and almost hit the floor when I was told that they could not evaluate him because they were full. Full? I even tried playing the "preemie" card and was told that being a preemie no longer meant you could receive help.

When my daughter was born (8 years ago and in a different state) they were beating down our door to sign her up for therapies.

As it turns out, I was a neurotic mess for nothing. Yet another lingering raw emotion from having a preemie. He is fine now. He is still delayed in speech but that could have something to do with being a boy, 2nd born and having parents who always stick a pacifier in his mouth to prevent him from eating non edible items. lol

Andrea said...

I know, I can't believe after 2 years I just figured out how strong the online preemie community is.

And, as usual, the medical establishment is like "Whaaaat? What are you talking about? We saved your babies! Isn't that enough? What is your problem?"

Of course we're thrilled to have out babies. As someone who lost one, I'm thrilled to have seen the second survive.

But it's like they just don't want to see how a parent's mental health affects interaction with that child -- never mind the disabilities that child may have later on.

I depends on modern medicine for everything. Don't get me wrong, I am so grateful for all they've done for my family.

But the medical establishment can be so blind. And I guess it's up to us to fix it.

Andrea

23wktwins'mommy said...

This may cause an uproar but I'm going for it anyway. Why can't we be sensitive and call preemies babies/children/infants? You don't say to a person who had a preemie "we are praying for your fetus," or if the preemie passes away, you don't say "we're sorry for the loss of your fetus." When my children were born at an extremely early gestation, they were issued social security cards, birth certificates, had medical insurance etc. etc. etc. They were alive and acknolwedged as United States citizens, and were legally my dependent CHILDREN even at 1 pound and even with medical technology keeping them alive. They were our BABIES. Calling them fetuses is insulting, and if we are trying to be promoting respect for everyone, can't we refer to preemies as babies/preemies/micro preemies, etc. out of respect for the parents who love and care for them? What is the goal/purpose/agenda behind attempting to minimize a preemie by referring to him/her as a fetus?
I make a stand because when someone is disrespectful to others here, there is always someone to stand up for them. I am trying to stand up for parents like myself who had extremely premature children and who recognize they were extremely underdeveloped, but refuse to refer to them by a term which is meant to dehumanize them. My children may have looked like frogs to some people, but their life had value and meant more to me than anything in this entire world. Please, I respect what everyone wants to do in terms of educating parents and getting the truth about prematurity out there, but please have respect for our children.

terri w/2 said...

Andrea;

I belong to a caregiver support group called The National Family Caregivers Association. They have a great newsletter, and frequently have articles that talk about the stresses involved in caregiving. Although their work seems to primarily be geared toward caring for the elderly, spouses with chronic medical conditions, they also do recognize caregiver stress among parents caring for children with disabilities. One article appeared in the Winter 2006 newsletter and was called "The Stress of Family Caregiving: Your Health May Be at Risk".

To contact them: info@thefamilycaregiver.org

I've also done extensive research on this topic a couple of years back and can send you links to good articles I've found.

Helen Harrison said...

Maybe I'm too much into the wonder of biology, but the term "fetus" does not seem "dehumanizing" or "insulting" to me. Same with "zygote", "embryo", "DNA," etc.

Helen Harrison said...

Re: "Mental health" issues in preemie parents --

Mental health in preemie parents has, in fact, received a lot of attention -- mostly to try to show that "neurotic" preemie moms inflict cognitive and behavioral problems on their preemie children.

Attempts to "correct" mental health issues in parents (read "moms") were then attempted to protect the preemies from their crazed parents (read "moms").

I don't believe any of these "interventions" ever delivered positive results.

Of course, most of these "interventions" were inflicted on families before MRI studies showed conclusively that preemies are brain-damaged well before they leave the NICU and are delivered into the hands of their allegedly "neurotic" mothers.

The brain damage shown on pre-NICu-discharge scans more than accounts for preemies' subsequent cognitive and behavioral problems.

But...I remember hearing a well-respected psychologist saying at a major neonatal conference that all preemies needed (to be normal) was a "momectomy."

The "momectomy" was tried in a major, almost total, year round, day care program for preemies across the country. (The Infant Health and Development Project.) The results were dismal.
***

Preemie parents need a lot of help, but the kind of mental health "help" offered in the past has been an abject failure.

The only people I feel are qualified to presume to deliver any kind of mental health services to parents of preemies, are those who are preemie parents themselves and have already "been there and done that." And even then...caveat emptor!

Anonymous said...

I totally agree with
23wktwins'mommy about the baby being reffered to as a fetus eventhough it has been born and no longer considered a fetus.

I am pretty sure that Terri w/2 is just continuing her crusade against the sextuplets. Many posts ago in the comments section she was quite nasty when talking about them and didnt seem at all ashamed about what she was saying. I think she is just jealous that she didnt have more children. Or maybe she is against ivf or any other ART (assisted reproduction technology). Or she is jealous that they get so much attention when she didnt. Who knows.....

Helen Harrison said...

To anonymous who agrees with "23wktwins'mommy about the baby being reffered to as a fetus eventhough it has been born and no longer considered a fetus."

Please start coming to neonatal conferences where you can tell this to the professionals who saved your babies, and who use the term "fetal-infants" rather frequently.

And...

Do you *really* think any of us here are *jealous* of the parents presiding over the tragic and futile suffering of these fetal-infants?

terri w/2 said...

Anonymous 10:45. Is it nasty to call for humane and responsible medical care? I am all for responsible/humane medicine - Neonatology that steps in to torture 22 weekers to life is not responsible/humane medicine. I wonder how much suffering these babies had to go through only to die days/weeks/months later? And, this was my original point back in June.

IVF/ART is also irresponsible when it results in a pregnancy of 6. How in the world could anyone be jealous of this poor family's horrific ordeal?

terri w/2 said...

And anonymous - interesting that you have difficulty with the term fetus, and yet in your post, you referred to the fetus/infant as "it".

23wktwins'mommy said...

This is the last thing I am saying about this subject, and since my sincere request to begin treating people's children with respect is being ignored, I have to reevaluate how involved in these discussions I want to be anymore.
Terri, you were not using medical terminology to talk about the fetal-like physical appearance and quality of a micro preemie, as would the neonatologists in a conference would. They would also more than likely use the term fetal-infant, therby distinguishing the birth of the infant from the baby in utero. Terri, you were identifying someone's baby, someone's child, someone's infant, and yet you referred to HIM as a fetus. I'd argue it is very clear to most people that your term has an agenda, and even though I too question resuscitation in the Morrison case, I do not need to reduce their last reamining child to a fetus. Like I said before, this is not the way in which mainstream society talks about people's preemies. You just don't call them fetuses. So Helen, saying it's not devaluing the child is untrue in the context in which the term was used by Terri.
Even if humans are made up on strands of DNA and are of the homosapien specie, you don't go around using these terms when talking about an specific individual.
PE, I can't be associated with a blog that takes low blows at people who are suffering with the loss of 5 babies and perhaps even all 6. I can't share the story of my children and have productive conversations with people who attempt to reduce the value of my children by calling them fetuses. If you do not want to take a stand on this one, when we are suppose to be respecting others and able to state our opinions in a way that is productive, then I would have to ask that you remove my link from your page, and I will do the same. I think I have a lot to learn as a mother of 23 week twins, and have a lot to share about my experience of chosing resuscitation and their particular outcomes, but I refuse to engage in conversation with people whose agenda is so strong that they can't see the insult in calling people's preemies merely fetuses.

Anonymous said...

Terri and Helen,

I wonder if it might be helpful if you explain a bit why you use the terms "fetus" and "fetal-infant" instead of baby/child/infant?

twinsx2 said...

Anonymous said...
Terri and Helen,

I wonder if it might be helpful if you explain a bit why you use the terms "fetus" and "fetal-infant" instead of baby/child/infant?

August 8, 2007 8:09 AM

Because if you have ever seen one/delivered one, you would know that they don't look like babies. They look like fetuses, or whatever the plural is. I had two. We were so proud of our 25 weekers. They were our first. We took tons of pictures, especially those with DH's wedding band on the boys' arms. We passed them out to everyone. Later we found out that most of our "family and friends" put the pictures in the trash. Why? Because they were too scary. They looked like fetuses not babies they told us.

I would suspect that the doctors would prefer to use “fetus” but feel that it is not politically correct. Ah, well, beauty is in the eye of the beholder.

Len said...

I agree with 23WeekTwinmommy. It seems like nastiness is completely tolerable within this discussion so long as you agree with HH and Terri. But if you were to say something from the "otherside" that is disagreeable you will be shut down. That does not equal an open discussion forum.

terri w/2 said...

Twinsx2 is correct. These kiddos do not look like babies, cannot function like babies, because they are fetuses. Are they our children that we desperately love? Absolutely! However, they are born months too soon - in the case of the sextuplets - nearly 18 weeks early weighing between 11 ounces and 1 pound, 3 ounces. They are being transferred from their natural womb to an artificial one.

I remember when my girls were born and the great-grandparents who were in their 70s at the time demanded to go to the NICU to visit - they finally managed to talk their way in (when we weren't there) only to be so soooo upset. They never went back in all the remaining 5 months.

One of the docs said that they were trying to get a mom to go on bed rest, and she wouldn't because she was too involved with a project at work. .so they took her to the NICU, and when she saw my girls (fetuses) she passed out. She went on bed rest.

terri w/2 said...

Fetal-infant definition from www.medterms.com:

"An extremely low birthweight infant. A very small infant. One, for example, with a birthweight of 400-500 grams."

In doing a search for this term, many many sites popped up, so it appears that many people are using this term to describe our micropreemies.

Chris and Vic said...

We all have strong emotions that may be just millimeters below the surface . . . which may surface when just the wrong word is chosen.

If there is a term that offends someone, and she makes it known--"The use of that term makes me cringe or makes me wince . . . could you please NOT use it any more?"

That person has asked in a fairly neutral way for what she needs/doesn't need. If the others involved in the discussion choose to respond, to give her what she needs, well and good. But there are no guarantees that others will respond to our requests with acquiescence. (On a support list, or a blog, in a marriage or in a family.)

If it is worth it to stay in the group despite terminology that makes you wince, then it is. Otherwise, you must distance yourself, as you say you are going to do, Twinsx2.

And IF this discussion is uninteresting without controversy, and IF, therefore, someone needs to stir up controversy in order to keep it interesting, then that is too bad, I say. This is the philosophy of the tabloids at the end of the check-outs.

We had a lot of constructive spirituality talk going on. To argue a semantic argument at the tail end is beside the point, beside the main issue of spirituality and religion and their roles in our coping with preemie-dom. In other words, we got into trouble when we didn't stick to the point.

We are a diverse readership with a lot in common. Do we wish to emphasize our differences or our commonalities?

Chris and Vic

Len said...

I don't have a problem with the term fetal-infant because you are stating the fact that the baby is human and alive outside the womb by using "infant". This is better and different than just "fetus".

terri w/2 said...

Ok, Len, so noted.

As Chris suggested, we should move back to the original thread which is prayer/religion/spirituality.

T

kate said...

I've already been through it with Helen on the fetus/infant language question and so i probably should stay shut up but of course i won't ;)

There is, of course, nothing wrong with the word 'fetus'. However, in the United States, this word has become intensely politicized -- in that it has been consistently used in the abortion debate, specifically to dehumanize the fetuses in question there...e.g. 'it's just a fetus'. I certainly do not intend to open the abortion issue here, but just want to point out that many of us have grown up with this politicized connotation to the word and thus take umbrage at a preterm infant being called 'fetus'.

This is a question of sensitivity to cultural norms, and it is important to realize that they may be different for us all.

I do think the term 'fetal-infant' is very reasonable, because it describes quite perfectly the status of these micro-preemies.

kate said...

ok, sorry! By the time i posted my comment someone asked to get back to the original subject...

I don't have alot to say about that, though. I struggle with my faith (Catholic, mostly). The death of my son did make my faith stronger (i found a good deal of comfort in the Church) but it is still not all that strong. Truly i do not think that big questions *have* answers (at least not in this world) and that is a bitter pill to swallow.

Helen Harrison said...

To anonymous who asked me: "I wonder if it might be helpful if you explain a bit why you use the terms "fetus" and "fetal-infant" instead of baby/child/infant?"
***
I personally use the term "fetal-infant" to refer to infants who are not physically ready to be born -- infants, who should still be fetuses *in utero* and, as a result, can be sustained *ex utero* only by imperfect and inherently damaging artificial life-support technologies.

I suggest a good course in biology to anyone who thinks these terms or ideas are demeaning or dehumanizing. I think they simply describe reality.

terri w/2 said...

Fetal-infant is a better choice, as this delineates that this is an infant who has been born but in the fetal stage, significantly lacking in development able to sustain him/her outside the natural womb. I will no longer use the term "fetus" in this context.

Perhaps we should try to go back to the orginal thread???

Anonymous said...

"I suggest a good course in biology to anyone who thinks these terms or ideas are demeaning or dehumanizing. I think they simply describe reality."

There was no reason to be rude like this and imply that those are ignorant, who chose to not refer to born children as "fetus".

Definitions online of fetus:

In humans, the fetal stage is the from the end of the third month UNTIL BIRTH.
www.ornl.gov/sci/techresources/Human_Genome/publicat/genechoice/glossary.html

an unborn baby from the eighth week after fertilization UNTIL BRITH.
www.childrenshospital.org/cfapps/A2ZtopicDisplay.cfm

Refers to the unborn baby after 10 weeks of gestation UNTIL BIRTH.
www.babynameguide.com/advertise.html

The developing offspring from 7 to 8 weeks after conception UNTIL BIRTH.
www.stjude.org/glossary

The baby in utero, after 8 weeks of pregnancy UNTIL DELIVERY. (Before then, it's considered an embryo.) The word fetus means "young one." (Derivative: fetal)
pregnancytoday.com/reference/library/glossary.htm

The developing baby from the ninth week of pregnancy until THE MOMENT OF THE BIRTH.
www.infertilitycentral.com/fertility/infertility-glossary,3.html

in humans, the unborn young from the end of the eighth week of pregnancy to the MOMENT OF BIRTH.
www.b-coming.com/html/glossary.html


The developing young IN THE UTERUS BEFORE BIRTH.
www.peteducation.com/dict_alpha_listing.cfm

term used to describe a developing baby from the nineth week of development TO BIRTH.
www.medgen.ubc.ca/wrobinson/mosaic/glossary.htm

The key word being BIRTH, no mention of whether that birth is preterm or not. Once you are born you are by definition no long a FETUS.

Can we move on now?

Anonymous said...

According to the definitions above all babies are fetuses until birth but you wouldn't dare call a fullterm baby "fetus". You wuld be considered incredulous. So don't refer to other's children as fetuses either simply because they were early.

terri w/2 said...
This comment has been removed by the author.
The Preemie Experiment said...

Can we move on now?

Anonymous said...

Terri w/2 said "IVF/ART is also irresponsible when it results in a pregnancy of 6. How in the world could anyone be jealous of this poor family's horrific ordeal?"

How do you know that it wasnt the choice of the parents? Damn Terri you are so judgemental. Your Catholic side is showing.

Anonymous said...

HH said "Do you *really* think any of us here are *jealous* of the parents presiding over the tragic and futile suffering of these fetal-infants?"

Well you asked. Yes I do. I think that you and Terri are very jealous of anyone who has something that you dont. You both are very judgemental. Please Helen dont try to act like you are the flower child free thinker that you claim to be. You arent but you are a bitter older woman who is unhappy in her life and cant stand the hand that she has been dealt. You complain all the time about your son. What about his suffering? Dont you feel for him rather than yourself? I dont think you know how to feel.

Why is it Helen and Terri that you are both singled out in these comment sections? Hmmm I wonder why.....

Helen Harrison said...

Oh my! Some posters (so bravely anonymous)have left their graffiti on the blog, while I was out at dinner last night, and busy with house guests today.
***

Anon (Aug 8, 9:25) says: "I think that you and Terri are very jealous of anyone who has something that you dont."
***

What is this, exactly, that you think we don't have and want?
****

Anon also says:

"Please Helen dont try to act like you are the flower child free thinker that you claim to be."
*****
Huh? I printed out your response and read it to the assembled dinner guests tonight. My husband (and guests) proclaimed it to be "Risible."

I am not now, and have never been, a "flower child" (though I do like to garden).

I *am* a non-deist (do not belive in "Allah" or "Thor", etc.") If that makes me a free-thinker, fine with me. But a failed free thinker?!? I don't get it.
***

"You arent but you are a bitter older woman who is unhappy in her life and cant stand the hand that she has been dealt. You complain all the time about your son."
****

Oh really! Please give quotes of me complaining about my son!
****

"What about his suffering? Dont you feel for him rather than yourself? I dont think you know how to feel."
***

I have spent countless nights awake thinking about my son's suffering, then (in the NICU) and now (31 years later).

For example, his unanesthtized shunt surgery in the NICU.

Because of my son's suffering, I led a campaign to acknowledge preemie/fetal pain.

I will give you all the references, if you wish, but the year was 1986, and no one else was willing to acknowledge that preemies/fetuses felt pain. I think they do. And I said so for the Washingtand Post and elsewhere. And now, most, but not all, of the medical establishment agrees with me.

*If* you have a preemie, and *if* your child was ever given anesthesia or analgesia, I(along with Jill Lawson and Sunny Anand) was responsible!
****

Anon asks:

Why is it Helen and Terri that you are both singled out in these comment sections? Hmmm I wonder why.....
***

I'll tell you why. Because a small, but strident, group on the blogospere has declared a sort of "fundie fatwa" against me. Somehow, Terri w/2 also got swept up into your witch-burning enthusiasms.

For those of you new to this "discussion," it is a long and tedious journey through many blogs and many rants.

But the bottom line is that I convey medical evidence that is greatly disturbing to others who are terrified that their preemies may actually have *sequelae.*

This is a case of attack the messenger, and, sadly, it seems to come with the territory.

Anonymous said...

Wow. What a FUN dinner party.

Anonymous said...

Now I see why you commented about the post being opened again...so you could get in the last word. Bet you'll do it again. But I don't care- not checking. Leaving. Obsessed much? Sharing blog comments at your home like that? Weird, compulsive, bitter.

terri w/2 said...

I'm wondering if "anonymous" is involved on the neonatology end of things, trying desperately to keep parents with differing views, who question the wisdom of neonatology, who no longer buy into the "miracle mentality" from posting - because if they do, they'll be slammed with personal comments.

After 20 years of caregiving, my skin is quite a bit thicker. I've been seasoned by my children's past and continuing painful journey through this life created by neonatal medicine.

23wktwins'mommy said...

So what then do you propose neonatology do? In what capacity would you like to see neonatology involved with babies? Or would you like the field to abolished? Honest questions. And for the record, I do not have issues with people telling the truth about preemie outcomes. I don't have an issue with anyone because they cite medical evidence on statistics about long term effects. I have disagreed with terms and tone in the past, but I'm not naive to the possibilites of disabilites may chldren may face.
I'd like to see a post on here about neonatolgy and what people would like to see it do. I often read comments about how terrible neonatology is:
"Suffering and hell - yeah, been there - it's called neonatal intensive care." "...painful journey through this life created by neonatal medicine."
Terri w/2
There have been other comments about how terrible neonatology is. I understand there is always going to be the resuscitation argument, but you seem to be chastising neonatology in general.

Anonymous said...

As a neonatologist, I'd like an answer to that question too!..I have a feeling it would be to not resuscitate below a certain gestational age...tell that to some parents who are given the option...it is a RARE mother & father who just want to hold their child without at least seeing how the first few hours/days go...I'd love an answer...Terri? PE? Helen?

Anonymous said...

Also, as the above anon (10 am)..I am not the one from 2 am..

Long Time Listener said...

Hi AnonNeo of 10.19
I think that Holland has a policy of generally no- resus below a given ga? I don't know off hand -but do we know what the research tells us about how that policy holds up there- how mums and dads and neos regard it maybe?

Helen Harrison said...

Briefly, what I advocate is this:

1)Open, honest and complete communication between parents and NICU professionals on medical and ethical issues.

2)Parental access to rounds discussions concerning their baby, access to their baby's chart, and more generally access to the same facts, and interpretation of those facts, as the staff, including knowledge about uncertainties, dangers, and alternatives to proposed treatments.

3)The right of fully informed parents to give or withhold consent for procedures in situations involving great uncertaintly, high mortality, morbidity, and extreme suffering.

4)Information on pregnancy outcomes as a part of prenatal care and the opportunity for expectant couples to compose advance directives stating what they want done (or not done) in the eventuality of an extremely preterm birth.

5) Acknowledgement and alleviation the pain of infants in intensive care.

6) An appropriate neuroprotective environment for babies in the NICU (i.e., developmental care).

7) Ensuring the safety and efficacy of neonatal treatment through randomized controlled trials of treatments and the use of evidence-based medicine in the NICU.

8) Nursery policies and programs that promote parenting skills and encourage maximum involvement of families with their hospitalized infants-- particularly help with lactation.

9) Meaningful long-term follow-up for all high risk NICU survivors.

10)A public and professional understanding that critically ill newborns can be harmed by overtreatment as well as by undertreatment; laws and treatment policies based on compassion; An awareness of the needs of NICU survivors with disabilities with adequate public support for them and their families; a decrease in disability through universal prenatal care.
***

Further elaborations can be found in:
Harrison H. The Principles for Family-Centered Neonatal Care._Pediatrics_1993;92:643-650.
***

As for not resuscitating at a given gestational age, I think this is between the well-informed parents and the obstetricians at or before 26 weeks.

Neonatologists who have a financial and professional interest in advocating treatment should not intervene unless the well-informed parents want it, and many, in my experience, do not. In fact the more the parents know (i.e. if the parents are medical professionals themselves), the less they want it.
***

And to those who expressed interest, Yes! it was a terrific party and another is planned for tonight. We may even have another blog reading!
***

Anon, posting at 2:06 AM, seems worried that I am obsessed.

I was blissfully asleep at 2:06 AM, but had I known of Anon's post then, I would have been concerned about Anon's bitter insomniac compulsions that lead him/her to post at this ungodly hour. I would certainly not want this "Anon"-- if s/he is indeed an MD -- treating any children of mine.

twinsx2 said...

You can take this full circle. Reproduction and birth is phenomenal. You can say that we are wonderfully and fearfully made if you chose. But, gestation is meant to be 40 weeks. In the scheme of things a “child” would still be a fetus at 25 weeks because it would still be in utero. However we describe the child, it might offend someone. Personally I thought they looked like monkeys, they were so hairy! I will always admit that when my two were born at 25 weeks I was NOT thinking about them. I was thinking that I threw up for almost 3 months. I was thinking about the death of one of my children at 22 weeks gestation. I did not want to lose another child. I also really believed that God was going to give me two children indistinguishable from their full term peers. I was thinking about me.

I constantly wonder if “I played God”. God was calling them home, I didn’t let them go. I know, I know, if I had cancer would I treat it? Would I use insulin? Yes. But sometimes our “feelings”, our paranoia, if you will, is not rationale. Actually, that’s redundant; paranoia by definition is not rationale. But, you get my drift?

I have no rationale reason for feeling betrayed by MD’s. I will say that I have not been treated the best by most of them. I do have ½ a brain in my head. But, because of that treatment, I admit I want to jump when someone tells me that they have an alternative cure for what ails my boys. Sometimes it takes all my strength not to get on the next crazy cure bandwagon. On occasion, I’m ready to book the flight to Lourdes. Anyone game?

For those who feel that God was there for them, I say I envy you. I really wish I could go there. I’ve tried. But, God for me has been like Job. If it’s not him, then he’s allowing “the guy with the pitchfork” (or is it “you know who?, he who must not be named”) to screw with me. After many years, I need a break of being messed with. And a little support form friends and family would be nice. Snort.

Anonymous said...

We had perfectly usable terms to describe these babes "Premature infant", "preemie" or in case of the under 26-27 weekers, "Micro-preemie" that completely described what had happened (baby born before fully cooked) and offended NO ONE. I don't understand why we had to insert a controversial, offensive to some term. It seems unnecessary and unkind.

Sarah

Helen Harrison said...

Many people are bound to be offended by certain words and sentiments expressed here. That is part and parcel of the controversial, open, and sometimes hard-hitting discussions TPE wants to have.

The majority of bloggers here take the "offensive" thoughts and words of others in stride and move on with the discussion at hand.

I think it is helpful to try to avoid taking offense where no personal offense -- to you or your child(ren) is intended.

Long term Listener said...

Hi Sarah Anon 1.08pm

I do know what you mean and it can be OUCH sometimes when you read something. From my POV there are a couple of issues that surround that feeling

1) cultural differences. My guess is that this is a primarily USA influenced board and so the posts use US terminology. The UK have different terms to the US and that can cause that OUCH.

2) medical terminology. Some on this board read alot of academic literature and have got hardened to the terms and , in some cases, have slid into that langauge, perhaps knowingly, perhaps not so.I'm with you, and others, so to speak in identifying that there is a huge amount of value Sarah in challenging that langauge as otherwise we become complicit in that language and perhaps that way of thinking.

Someday, we can draw up a list of OUCH's, acknowledge that are problematic, acknowledge that we use them perhaps as a shorthand, but that we don't mean them to harm. But we also need to challenge language that is simply establishment.

medrecgal said...

Helen,

Do you have your own personal blog or website? Some of your commentary in regards to your son (and prematurity in general) has piqued my curiosity, particularly since it seems to incite the wrath of some other people who post & I'm interested in your perspective. I think it's some weird combo of being a former preemie (with some ongoing sequelae) and a wannabe physician.

Your comment about giving parents more say in their baby's treatment (#3 in your list) struck a familiar chord; were it not for my mother's decision NOT to listen to the doctors who said "don't bother, she'd be better off dead than having that surgery", I would likely not be here to write this!

terri w/2 said...

To Medrecgal:

I cannot speak for Helen, however, I want to address your question.

I do believe that right now what neonatology is all about, is saving every infant pretty much no matter what - no matter what the parents want, no matter how damaged the child may be, no matter how excruciatingly premature. The recent 22 weeker sextuplets are an example. (Some NICU's thankfully, are the exception and practice more comfort care measures, ours was not one of those). Part of this over-treatment has come about because of laws in our country (U.S.) that dictate what must be done with infants born alive, or infants born with disabilities, or the potential for disability (as with preemies and their acquired disabilities).

There has to be some balance here between extreme over-treatment that results in much pain during the NICU stay, a lifetime of pain and disability, and doing what is in the best interest of the child/parents/family. Afterall, the government that has implemented these laws, as well as the NICU caregivers disappear from these families lives once the NICU doors close. The families are pretty much left on their own to figure out how to find care, pay for services, jump through the hoops of social service systems that cannot even begin to meet the needs of these survivors.

Yes, there are arguments about quality of life, doesn't every baby deserve a chance, how disabled is too disabled, etc.

However, you thankfully, are able to advocate for yourself, and in your case, the outcome was good. This is often not the case for those infants who are born severely premature - under 26 weeks, weighing about a pound. It is especially challenging when there is an infant who is severely premature, who has sustained a massive brain hemorrhage and/or hypoxia. Should these babies all be aggressively saved when the neonatal pain is so great, and the lifetime of pain and disability is so monumental? Many here will argue yes, life is life and should be preserved at all costs.

I disagree.

When the on-going pain for the infant/child/adult, and the burden to the families so high, the families should have a right to choose. The argument then becomes - well, sometimes the Drs. are wrong, and an infant turns out quite well despite the challenges in the beginning. Yes, that does occasionally happen. But the parents should be well-informed and be the ones to make that choice. Afterall, they are the ones taking that child home after the NICU is done and providing a lifetime of care.

Helen Harrison said...

To long time listener who said:

"Someday, we can draw up a list of OUCH's"
****

The terms "preemie" and "micropreemie" hit my personal "ouch" center or perhaps it is my gag reflex.

I think these terms attempt to trivialize and "make cute" a painful and tragic set of realities.

They are also used to try to "normalize" an inherently abnormal situation (for example, when people speak of "normal preemie behavior.")

Because these terms have become so widely used and accepted, I tend to keep my objections to myself. But since the topic has arisen...

****

To medrecgal:

I have participated in the NAROF website (which is actually owned and run by a woman in Australia).

It is often attacked by various "special interest groups," however, and it may, or may not, be currently functioning. Some of my old lectures and articles can be found there.

I do not have a personal blog because it is all I can do, at the moment, to keep up with the various preemie lists, take care of my son, write the articles and lectures I've contracted for, and post to this blog.

I have been sharing my views here since TPE began, so rereading old threads may be helpful.

If you have specific questions, you can post them here, or write to me directly at Helen1144@aol.com

23wktwins'mommy said...

I appreciate twinsx2's last post. Even though I often disagree with some of the tone and wording used here, I do not want to be mistaken for someone who is 100% dedicated to resuscitation and continuing care no matter what. I am all for parental involvement and decision making, and I think the reason I had such a hard time with some things said on this blog is because I didn't realize some NICUs chose to continue care no matter what. This can clearly be a cause for how angry parent's feel toward the neonatologists.
Our NICU was the opposite. They were very honest about realities of the NICU course and long term outcomes. We were involved in nearly every decision made for our 23 weekers. Our NICU wasn't comfortable with the unnecessary suffering and devastating long term outcomes that preemies with massive brain bleeds or those who coded, etc were likely to have. Parents of extremely sick babies are asked rather convincingly by the NICU Drs. to make their baby a DNR. We were as was another family in our pod that we became friendly with. I know our NICU takes it to the ethics board at times where the baby is clearly suffering and the parents are struggling with acceptance. I guess I can't imagine a NICU different from ours. Our NICU will not resuscitate before 23.1 and they will not resuscitate at below 400 grams. There are various criterion they use in the decision to resuscitate extremely premature infants. I agree with these measures. They also practice developmental care, and they are "family centered." I was able to attend rounds EVERY day and had multiple family meetings to discuss the course of action with the twins especially at very critical periods in their early lives. Helen has said she had a lot to do with the changes in the NICU. Thank for that Helen. It made all the difference as a parent. The NICU made me know it was okay not to do everything medically possible, because at the end of the day, I truly believe that there is a limit to what medicine should do. I am for resuscitation at 23 weeks with parental consent and I am for comfort care with parental consent. Having been there, I realize it is not an easy choice. I have been very honest about saying we chose resuscitation but also chose a DNR at one point. I am so thankful I have both my 23 weekers alive and at home with me, and I feel good about the decisions I made for them. That is how I want parents to feel; and this is only made possible through NICUs who are family centered, open and honest, and not strictly interested in keeping babies alive at all costs.

Helen Harrison said...

Also to medrecgal, who wrote:

"were it not for my mother's decision NOT to listen to the doctors who said "don't bother, she'd be better off dead than having that surgery", I would likely not be here to write this!"
****
I'd be very much interested in knowing where and when you were born, at what gestational age, and what hospital?

When my son was born in 1975, there were no questions asked about whether or not he should have shunt surgery. This was not even an ethically debatable question.

I have yet to hear from any other families from this era who were given any choices about shunt surgery -- except in a few very severe cases of spina bifida in which almost no brain tissue was left the skull could be transilluminated with a flashlight.

medrecgal said...

terri w/2,

Re: "pretty much saving every one no matter what"...this strikes me as swinging too far in the opposite direction from that which my parents faced 30-some years ago wherein the prevailing philosophy seemed to be "if they're going to be disabled, why bother wasting the technology". Like you suggested, there isn't (yet) a happy medium between "going overboard and doing what is best". That, I'm afraid, is still a very thorny issue hotly debated among medical ethics committees, families, physicians, and others who may be involved in the care of preemies (particularly those who are either extreme micropreemies or those who have disabilities). There are, as we know, still no easy answers. I have no plans for children at any time in the near future, but I always said that if I did ever have a child, I would hope to hell that (s)he wouldn't have to endure what I did (and in some ways still do). I wouldn't wish it on any child or their family.

medrecgal said...

Helen,

I was rather surprised to read your comment that "there were no questions asked as to whether or not he should have shunt surgery...this was not even an ethically debatable question". I was born just a couple of years before your son, in 1973. I was a 34-weeker, and the debate happened after I'd been transferred to a large hospital in the closest city that had a more extensive NICU. So it wasn't my location that was the problem (they had the necessary resources for any kind of procedure a small baby might need); it was the opinions of those supposed "expert" doctors who were of the mind that I was too small (4 and 1/2 pounds at birth, but I had lost some weight like most babies do after birth) and too sick to possibly benefit from surgery. The kicker is this: it was a "rogue" neurosurgeon from my small home city who was willing to buck the odds and at least try a shunting procedure when those "big city experts" didn't want to touch me. I was, as I found out as a teenager, his smallest patient, and I retained that distinction through the remainder of his practice, at least over two decades. I learned a lot about medical ethics, the origins of these sorts of debates over preemies, and why sometimes you have to at least try a procedure or treatment without really knowing if its going to work. So I can see both sides of this coin; but I'm afraid I would be even LESS objective than most mothers if the tables were turned and I found myself faced with a sick preemie.

Helen Harrison said...

Wow, Medrecgal --

My son was 2 lb. 13 oz. (and dropped from there), and, in 1975 (although there were questions about letting him go --after a major brain hemorrhage), it was never about *not* doing shunt surgery, it was more an issue of stopping the ventilator to see if he had "brain enough left to breathe on his own."

I can't imagine (though I certainly don't know what was being done everywhere) that shunting, or not shunting, was an issue anyhwere in the US at that time -- especially at the very "high" birth weight you had.

You would not have qualified as VLBW (below 1500 g), which is good in terms of your outcome, but hardly comparable to what the rest of us faced/are facing with our children.

In other words you were *much* bigger and almost certainly *much* older gestationally
than the babies we are talking about here.

There were situations back in the 1970s where various experimental treatments were being tried to avoid shunt surgery, including use of diuretics, head wrapping, and/or a "watch and wait" policy to see if some babies compensated on their own. Some did, actually.

I'm wondering if this might have been what was suggested in your case, and your mother may have misinterpreted the intent.

Did you develop hydrocephalus as a result of IVH? What was your gestational age at birth?

Helen Harrison said...

To medrecgal:

I re-read your comment above and saw that your gestational age was 34 weeks.

My son was 29 weeks (or 27 weeks depending on how one does the calculations).

Your (relatively) near-term gestational age and your (relatively) high birth weight both put you in a whole different category from almost all the babies being discussed here.

I can't think of a time when 34 weekers were just "let go."

Were you on a ventilator? Did you have an IVH? If so, what grade?

Helen Harrison said...

I should probably add here, that prematurity at *any* stage is problematic, and hydrocephalus at any age can be devastating.

There are certainly plenty of 34 weekers who, compared to fullterm infants, have more than their share of, sometimes quite serious, problems.

However, most of this blog and the ethical debates we are referring to have to do with much, much, smaller and much more premature infants and much more "high risk" infants. This makes a *major* difference.

I must also point out here, that, even in 1975, my son was by no means the youngest or smallest infant *routinely* slated for shunt surgery.

Anonymous said...

Why do you have to devalue and pick apart what med said? You are not the be all know all. You have no idea if she, and/or her mother, have the story straight. And, there is no need to minimize her story or comments just because she was a 34 weeker.

medrecgal said...

Helen,

Yes, I'm aware of that, so the story I heard struck me as quite astonishing at the time. The more I researched later on, the less I understood the whole controversy. It wasn't like we lived in Hicktown, USA where the resources weren't available, or something. And I wasn't impossibly tiny, either, so it never quite made sense to me when my father explained that they were sure I would wind up either dead or at least severely compromised. I was just very glad to know there was one neurosurgeon who didn't have such an unnecessarily doom and gloom outlook. Yes, I had some other problems common to preemies, but it wasn't a completely hopeless situation. Personally, I always thought they had it completely backwards, in the sense that I would have very likely wound up MORE compromised if they hadn't done the surgery, so why were they even debating about it? I'll never know, but I'm just glad someone stepped in before things got even worse.

And in the spirit of the original topic of this post, I always said some higher power was watching out for me in all of this, because I managed to survive and thrive after that surgery even though my tiny heart stopped at least once. I also attribute it to what my mother termed being a "tough little bugger"; apparently I was feisty and wanted to see what life was all about even after those doctors had written me off as a hopeless cause.

Helen Harrison said...

To anonymous who said, apparently to me:

"Why do you have to devalue and pick apart what med said?"

I'm not trying to devalue anything she has said, only to say that it strikes me as very unusual that anyone would think there was a choice about shunting a 34-weeker with hydrocephalus, even in 1973. I'm trying to figure out if there were extenuating circumstances.
****


"You are not the be all know all. You have no idea if she, and/or her mother, have the story straight."

I'm saying that I *don't* know, and that's why I'm asking more questions. It is an unusual story even for the 1970s.

I've interveiwed hundreds of parents of preemies from that era, scores of neonatologists, and more than a few neurosurgeons. I've never heard anything like this before.
****

"And, there is no need to minimize her story or comments just because she was a 34 weeker."

As I pointed out, being born at 34 weeks is still probelmatic. And hydrocephalus at any age is a major life-long medical issue.

But being born at 34 weeks is a very different situation from that of much younger preemies born at 23-26 weeks which is the population we are talking about in regard to decision making.

Generally speaking, outcomes at 34 weeks are much, much better than those at earlier gestational ages because of the higher level of brain and organ development at the time of birth.

Babies born at less than 32 weeks, and those at less than 26 weeks are considered, by neonatologists and follow-up experts, to be in entirely different categories from those closer to term. This isn't to "devalue" 34 weekers, but to say that their outcomes are almost always significantly better.

medrecgal said...

Anon 7:48,

Yes,I had the story straight; I heard it directly from my neurosurgeon, and my father, both of whom were right in the middle of it. Thanks for backing me up, in any case. Sometimes it's NOT all about size, gestational age, or location. A friend of mine born only a few months later at an earlier gestational age and smaller weight has absolutely NO sequelae.

There are a whole myriad of factors that determine the outcome of a particular preemie, of which those are just a few. I do realize that in these days of saving babies who weigh a pound or so, I would be considered positively huge and would not likely be such a source of controversy, but back then it was a bit different. I'm just here to offer a slightly different perspective.

medrecgal said...

Helen,

I don't know that much about the "extenuating" circumstances except that I had other illnesses common to many preemies, which shouldn't have necessarily figured into the equation. Many preemies have the constellation of problems I had, and didn't stir up such controversy even then. (Problems that stem strictly from immaturity, like RDS, heart murmurs that resolve with growth, etc.) Who knows why those supposedly "intelligent" doctors had given up on me? I never quite figured that one out. Maybe I just happened to run into a few of those unfortunate types who think a potentially disabled life is somehow worse than no life.

Helen Harrison said...

To medrecgal who said: "I do realize that in these days of saving babies who weigh a pound or so, I would be considered positively huge and would not likely be such a source of controversy, but back then it was a bit different"


Even back then, saving a 34 weeker was not even close to being a source of controversy, nor, as far as I know, was treating hydrocephalus, although experimental techniques were, and still are, being tried instead of shunts.

It would be interesting if you could contact the neurosurgeons who would not do your surgery and find out about their perspective on the situation.

medrecgal said...

Helen,

A peculiar idea, indeed...I have enough knowledge of the subject to understand where it might have been coming from, since for all their utility, shunts are (still) fraught with problems and potential complications. Maybe they had just convinced themselves that it was better not to start down that potentially endless road of complications, surgeries, and other hazards; of course, I turned out to be one of those rare few who did NOT wind up requiring repeated surgeries. Perhaps they were just not good at dealing with uncertainties, or they figured it might do more harm than good. All I know for sure is that I was fortunate my parents were stubborn enough to ignore all the insanity and keep trying until they found someone willing to chance it. All I know is that had I managed to flip roles and become a surgeon (very much wanted to, couldn't make it happen), I would never have given up on a patient that easily. I had a great example to follow, after all.

Helen Harrison said...

To medrecgal:

How many shunt revisions have you needed?

medrecgal said...

Helen,

Fortunately I've never required one. At this point in my life, it's basically a "leftover", since it is not functional. (I guess technically I'd have what they term "arrested" hydrocephalus, which supposedly can return, but luckily for me hasn't!) What that history has left me with are peculiar cognitive problems (that no one seems to know how to handle properly) and a propensity for migraines that at times freaks everyone out because they worry it might be related to said shunt. I've come close enough to the possibility of further surgery to be greatly relieved that it has never happened. I get asked about it quite frequently by curious medical types, even those who'd have no particular reason to be interested. It's mostly the cognitive/perceptual/motor stuff that makes my life a bit tough to handle sometimes. It confuses people and makes many things a lot harder than they ought to be for someone of reasonable intelligence. But if I explain about the shunt, somehow it makes more sense to them.

Helen Harrison said...

To medrecgal:

This is truly remarkable!

I'm wondering if the original shunt was even necessary?

medrecgal said...

By the looks of the inside of my head, my educated guess would be yes, because it probably saved my brain from further damage from the hydrocephalus. (I've seen a CT scan.) There's no way to know if it will spontaneously arrest, and when I had the surgery, it was still progressive. As it was, I wound up losing some significant function in the right hemisphere, which translated into those visual/motor/perceptual issues I mentioned previously. I have three college degrees and a dead-end part-time job; I had to go through a nightmare before managing to get a driver's license; it took me a total of 14 years to get through college to a place where I obtained a potentially useful degree (I was never a full-time student because of the information overload that came from slow information processing); I make them all scratch their heads in utter confusion because I have such outstanding abilities in some areas but serious problems in others. They still don't know how to help me hold down a job, because I can't multitask or keep things in a proper sequence to save my life. Need I say more? I might have escaped RELATIVELY unscathed, but I can't imagine what I'd be like if I hadn't had that surgery since it was several months afterwards that the hydrocephalus arrested. My brain may very well have been mush by then.

Helen Harrison said...

To medrecgal:

But the first CAT scan on an actual patient was done in the UK in 1972. And your shunt was implanted in 1973.

When/where was your CAT scan done?

medrecgal said...

I was 13, and that was long after my shunt stopped functioning. The distortion of the ventricles was clearly obvious, such that the left hemisphere was almost normal, and the right one was decidedly not. The difference in appearance of the two sides could very well explain the peculiarities in my cognitive functioning. The timing was such that they didn't appropriately recognize those issues until long after I'd last encountered my neurosurgeon. I can't imagine what would have happened if those two situations had intersected.

Helen Harrison said...

To medrecgal:

The scans that would have been definitive about needing, or not needing, a shunt would have to have been done immediately before and after the original shunting.

Shunting itself can cause damage and cause hydrocephalus, that might have arrested if let alone, to worsen. This is one of the great dilemmas about when/if to install a shunt.

*If* it is possible to get by for a while without shunt, and this process may take months, the hydrocephalus may arrest on its own and that is generally thought to lead to a better outcome.

What you saw at age 13 does not necessarily tell you about the need for the original shunt.

medrecgal said...

Helen,

Well, I know this much...when hydrocephalus becomes arrested, the ventricles retain their enlargement; small ventricles on a CT indicate shunt dependence. I also know I was still quite young when the process arrested.

I also know that sometimes the treatment can be as bad as the disease (as it was once said in a discussion about these sorts of matters, "Of course there's going to be some degree of damage when something is pushed through the brain..."), but the thinking was that they didn't want to see any further progression of the hydrocephalus because they were concerned it would have a seriously negative impact on my cognitive development (or as it was once put by my father, "They were all telling me you'd be retarded..."). I consider myself fortunate not to have repeated surgeries, since I am well aware that oftentimes the more surgeries you have, the more damaged your brain gets from the repeated manipulation.

So, I can see where this dilemma started, but I also think that there are times when the "wait and see" approach can lead to just as much trouble as surgery. It can certainly look like a no-win situation in some cases. That's just the nature of the beast with hydrocephalus; sometimes it's a tough call how to properly handle it so the best outcome is achieved. But then again, you can't always tell the degree of damage just by looking at the brain; there are some cases where the cortex is compressed to almost obliteration where almost normal intelligence is retained; there are others where the compression is much less and so are the cognitive abilities. Bottom line, hydrocephalus can be a nightmare, no matter the degree or duration. Based on a lot of research (curious patient, wannabe physician) and a lot of experience as a survivor. There are gradations, of course. For as much of a problem as it's posed personally, I know it could have been far, far worse.

Chris and Vic said...

To medrecgal:

Do you consider your right-brain weaknesses similar to non-verbal learning disability? Do you know Byron Rourke's work? Do you see things the way Rourke sees them, with respect to right-brain stuff?
Have you ever had the NLVD diagnosis?

In trying to picture the brain and the shunt surgery, I have often wondered about the track of the shunt tubing, and the damage done just by tunneling through the brain tissue with the tubing. Have you ever wondered that? Or asked that question of a neurosurgeon?
If so, what answer have you gotten? Is your shunt on the right or left? Do you think that it makes a difference to your brain function whether the tubing is on the right/left?

I ask these questions because my son Vic has had 8 shunt surgeries, all in his first year of life. Originally, he had 1-2 mm. of brain tissue remaining on the perimeter of his brain, following the failure of the first two shunt surgeries, as a two-pounder, in the NICU---this was 12 years ago.

Even if you have a part-time dead-end job, you seem very wise. I know that that doesn't translate to getting on well in the world---you have to be quick in order to get on well in the world. You have to be able to multi-task and have all those neat executive functions up and running smoothly . . . which makes the world a hostile environment for many wise and cool folk.

I wish with all my heart that there were niches for people who don't want to or cannot multi-task and who cannot spin like a top with their executive functions. I much prefer the variety of all the abilities. I like the folk who march to the beat of a different drummer--they are interesting people. They are the ones that, having found another way to BE in
the world, can teach us how to find alternatives in many areas. Who knows? Maybe some one of them could suggest alternatives to wars? Or alternatives to all the conspicuous consumption we are locked into?

Thank you for joining this discussion, and for your candor.
I hope you find a way to be in the world that is satisfying to you.
You are the kind of person that Oliver Sacks and Robert Kurson write about . . . your story needs to be told.
Chris and Vic

medrecgal said...

Chris and Vic,

Funny you should mention this aspect of it...I am actually the author of a chapter in a book about the intersection between NLD and employment. So to answer your questions more directly: Yes, I'd certainly consider my problems to be a type of NLD (my official dx said something like "right hemisphere dysfunction", which much of my own research translated to NLD). As for Rourke...I am actually part of a Yahoo group or two of people with NLD, and he is a source of both curiosity and some degree of derision because of his generally pessimistic slant on NLD. I have read some of his research, and frankly it can be pretty depressing. I can see where it originates, but I think it needs to be broadened and opened up to include more positive information. He makes it sound like NLDers can't do much of anything sometimes, and you can only read so much without becoming disheartened. (Yes, I've actually read some of his literature.)

Your suggestion that there may very well be a connection to literal, physical damage from shunting procedures is also an idea that's been tossed around more than once in my lifetime. It's not a surprising theory, by any means. It just so happens that my shunt is on the right side; I've heard it said that they often use the right side because they don't want to risk damaging the primary motor centers or language areas of the left hemisphere.

And XF issues...ouch! I'd have to write a book to tell the whole blasted story. That aspect of it is partially responsible for my job situation and can be very frustrating. They don't understand when you tell them you can't do 74 things at once, or in a proper sequence. They don't get it when you can't learn a dozen different things simultaneously and need instructions spelled out. Let's just say all of this is painfully familiar.

Andrea said...

medrecgal --

You need to write a book. You are fascinating, well spoken and clearly highly intelligent with such personal stories to share. I'd read it!

Andrea

medrecgal said...

Andrea,

Actually, I've been trying to do that for years now and the story just keeps getting more and more convoluted. I started it as a journaling project as a senior in high school, before they realized that I had serious cognitive issues, and have contemplated trying to put it all together into some sort of coherent story. I wouldn't want the recognition, though, so I'd probably try to publish it anonymously or at least under a pseudonym.

Andrea said...

Med --

Perhaps a coauthor?

medrecgal said...

Andrea,

Don't know how that idea would work, but I guess the first thing I'd have to do is a generalized outline so everything had some kind of coherent sequence to it. The issues have become so intertwined over the years that it would be quite an interesting project just trying to make some sense out of them so the next guy could really understand where I was coming from. Perhaps I should get on that.

Chris and Vic said...

Medrecgal, the latest fashion is to entitle each chapter with the name of a character, telling the story from that character's perspective. Would that work for you as scaffolding/structure, do you think?

Or you could do chronology, year by year or era by era.

Chris and Vic

medrecgal said...

Chris and Vic,

Interesting theory about a way to write about the whole conglomerate, to be sure... it would be like trying to get inside the heads of some people who didn't quite know what to do about something literally inside MY head...and who's perspectives I never quite understood. That might be an interesting and different way to look at a situation I often can't get outside of personally.

Chronology might be tough, only because there was so much intersection between various parts of different time periods, and there was also a long period where it was basically pretty much irrelevant (not long enough, however!). I'll definitely be pondering this one.

andrea said...

Sorry, off topic:

Anyone know where I can find studies on the marital stress of preemie parents, divorce rates, etc? I've looked on pub-med, but you know...

I think we all know the reality, I'm just wondering if anyone has actually studied it.

Thanks!
pantrypuff@yahoo.com

Andrea

Helen Harrison said...

To Andrea:

I can't believe something hasn't been done on this more recently, but here is a study using 1988 data:

http://paa2004.princeton.edu/download.asp?submissionId=40742

medrecgal said...

Helen,

I finally had the opportunity to go back and read the archives of both this blog and that of Neonatal Doc, where you've posted plenty about your son's situation. What struck me, though, was a comment you made on the latter regarding your brother and the probability that he has Asperger's: "Because he is aware that he is abnormal, he suffers from that knowledge. He also doesn't appear impaired (at least at first glance), so people don't respond sympathetically to his bizarre behavior." As I said here to Chris & Vic, I know a LOT about a condition that's often thought of as a cousin to AS, NLD; people don't generally have any sympathy for that, either. Sometimes I reach a point where I just want to scream something like, "What do I have to do, show you a picture of my brain?" when they give me a hard time about the way I do (or don't do)things. (I actually had a manager with a modicum of understanding suggest this once.) Fortunately now I've reached a place where I'll have some supports around when I try again to get back into a full-time job. Maybe this time I'll actually have some degree of success despite the NLD. One can only hope...

Helen Harrison said...

To medrecgal:

Thanks for your offer! I'd love to introduce you to my brother and get your impressions.

My step-brother's issues go beyond NLD, however, and include behavior so bizarre that they tend to attract the attention of the police. He has been arrested on suspicion of drug abuse or drunkenness (simply on the basis of his behavior). His social/public behavior can be highly inappropriate.

He has been hospitalized for psychotic and sometimes violent episodes.

He also has a touch of Tourette's syndrome and schizophrenia -- hears things, sees things, and repeatedly says inappropriate things.

He was not a preemie, but has a paternal uncle who had similar behavior. So we suspect his problems are genetic, unlike the problems my son has which are clearly prematurity-related. (Though my step-brother and I share a family we do not share a father or an autism genome.)

All things considered, when my son is free of medical issues, I'd say he is actually happier than my brother, because my son is too retarded to clearly realize, or suffer much from, the fact that he is disabled.

There are so many forms and permutations that brain damage can take.

Helen Harrison said...

To medrecgal:

I may have misread your previous post which I took as an offer to share some of your NLD frustrations in hopes it might shed some light on my brother's situation.

But I would really appreciate it you could do this. I am particularly interested in when and how you first became aware that you had issues.

Also, do you have any information about your childhood development? Were there any danger signals there?

medrecgal said...

Helen,

There was a huge time span between when the issues were first recognized as existing and when a formal diagnosis was applied. I was all of about 7 or so when I was first sent off to the "resource room" because I had serious issues with math and numbers in general. One former teacher, from fifth grade, once said: "Oh, we knew you had problems, but they were confined to specific areas and we thought you were bright enough to handle them." (I was simultaneously falling apart in math and outrunning their spelling system such that teacher had to devise her own tests to keep up with me.)

I almost flunked out of the 8th grade because of the change in the pace at which information was presented; it was then that I got my first hints that this was more than just a numbers problem.

Then came the tutors, and by high school, a boatload of extra help in things even other than math (chemistry, history, etc.). By the time I was a senior, I was down to three courses.

College...that was when everything basically fell apart and they really began to wonder whether it was a reflection of some unusual form of learning disability. I was diagnosed with what was then termed a "right hemisphere dysfunction" after I had barely managed to survive my first attempt at college. None of my former high school teachers were surprised when I came back to tell them what had happened, which was quite telling, indeed. And neither was that former resource teacher. So the age at diagnosis didn't reflect the true scope of the problem.

medrecgal said...

Helen,

This is "part 2", more about the NLD issues. Once I got past the initial denial stage and accepted that the problems would continue to dog me unless properly addressed, I tried returning to college. The same problems continued, but I was still able to compensate fairly decently. Then I tried to go back to a 4-year type college full-time, which was an utter disaster. So I hightailed it back home and said, what the heck do I do now? I wound up going to a local college part-time, and with some accommodations managed a 3.67 GPA. (Things like extended time for exams and papers, tape recorders for lectures, and such were a tremendous help!) Then I tried to get a job, which is a whole other aspect of NLD. Eventually I wound up returning to school for a totally different degree, and I'm still trying to figure out how to hold onto a job well enough to actually USE that most recent degree. More later, if you're curious.

Helen Harrison said...

To medrecgal:

Thanks for the info! I do have a few more questions:

Do you find the demands of your current job to be a greater or lesser challenge than college?

Can you imagine a type of job where your skills could prevail over the challenges?

medrecgal said...

Helen,

My current job is truly a nightmare for someone with NLD. The challenges are somewhat different between college and the job, because on the job they're not obligated to be nearly as accommodating as they are in college. (As I've heard it said before, in school, you're paying them for a service to you; on a job, they're paying you to provide a service to them.) The worst part isn't necessarily the direct effects of the NLD (e.g., speed issues, inability to multitask, being completely overwhelmed by excessive demands and sensory overload), but the attitude of my immediate supervisor, who is one of those people who truly doesn't "get it" and thinks my slowness is intentional. When she told me that in no uncertain terms, I had all I could do not to smack her upside the head and tell her to get a clue. But I had to restrain myself because I wanted to hold onto my job!

As for skills prevailing over the challenges, this could only happen if accommodations were made. It's not so much a matter of the particular field or area as it is of a certain degree of patience and enough opportunity to stretch out the learning curve. Translating skills learned in a classroom into a job situation is a huge hurdle because of some aspects of NLD; as I explained to some of the people trying to help this situation, it's a case of having to break it up into smaller chunks so everything isn't just thrown at me at once, and not expecting a constant stream of switching from one task to another and then another and on and on. As a college instructor once put it, "Once you know it, you know it forever. It just takes you a long time to get it." That's why I know all kinds of weird and esoteric stuff about the medical sciences but had such a time surviving college. There were no time pressures with my own research. Sometimes this can be so utterly frustrating.

Helen Harrison said...

To medrecgal:

Your posts are nearly perfect -- unlike mine, which are riddled with typos (to be fair to myself, I'm doing a lot of these posts with my 8 month-old nephew on my lap).

I can't help thinking that something in the writing or publishing field would allow you to flourish.

I'm not sure what you are doing now, but I think you have a potentially good job future -- you are far more careful and literate than most of the competition.

Chris and Vic said...

Medrecgal, this discussion is utterly fascinating to me. Again, thank you for your candor. You are incredibly self-aware, AND you are willing to share your strengths and weaknesses with no defensiveness--this is MORE than candor. It is wisdom.

I apply your situation to the boomers, who are an aging workforce. Employers, like the ones you talk about, had best be able to adapt the workplace to the needs of boomers who are slowing down, who are not so able or willing to multitask. Both you and the aging boomers are sensitive to sensory overload--and employers will lose their competitive edge if they refuse to adust their workplaces to such a large group of potential employees. Some organizations may say "Devil-may-care" but they do so at their own peril, diminishing their appeal to such a large demographic.

(Another demographic that may need to have a pace-adjustment is the parents of young children, who get calls from home or from the babysitter about their young kids, who may have to leave work to take a child to the doctor, etc. My daughter, with a 2-yr-old has to work around this issue--she has actually gotten the okay to work at home 2 days/week.)

This is a boomer talking, asserting that such a philosophy of work diminishes quality of life for me. Rapid-fire change, tap dancing faster and faster, constantly learning new technology, new policies and procedures (I am a nurse in a critical care area) adds up to chaos for me. I see that younger staff don't flinch---in fact, they say they love the "fast-paced environment" and would be bored with a slower-paced job.

I think that is crazy---all that change-and-change-again makes one rabbity. By that I mean, everyone is starting to behave like a hyperactive child in an environment like that. You can call them "bubbly" or "bouncy" or "lively" but to me it is over-the-top.

So, Medrecgal, I am in the same camp with you. I want to be more deliberate at work. I want an even, if not a slow pace. I don't want to get 2 dozen emails a week, telling me of policy changes that I need to remember. I don't want to come back every week to a new piece of technology to master; or a new form/paperwork, now computerized of course. Hey, a new "tab" for the computer charting system--am I supposed to say "Oh, goodie!" to that??!! I actually say something, under my breath, that is the polar opposite of "Goodie!"

I agree with Helen that you may find a suitable niche in a publishing house or as a writer. For example, the state sends out dozens and dozens of pamphlets, concise hand-outs in the educational field, the health field, from the DNR (Dept of Natural Resources)--all of which explain something, some rule-of-the-game, or some right, or some program.

Or perhaps the local newspapers would value your writing skills as a reporter or editor---a health issues contributor? (But then there is a busy, noisy newsroom, and there are deadlines---you would have to work through those kinds of issues.)

I wish you the best--I really do. I identify with your complaints about the workplace in general. You will have to create a niche for yourself, and work on your own terms.

Chris and Vic

medrecgal said...

Funny you should both mention writing as a career...I researched the possibility at one point of pursuing some combination of writing and medicine as a career; problem was, it required all the same math and hard science courses that forced me away from even attempting pre-med. It's just nuts that I can handle things like anatomy & physiology, biology, but not related disciplines like chemistry. The thing that really stunk about it was when I tried the latter in college, it was yet another experience of beating the average on exams but not being able to apply the knowledge in a lab setting. Another frustrating byproduct of NLD.

The big problem in all of this I guess is that a part of me refuses to shift completely away from the medical connection; but that would be like tearing my heart out and thinking I could still function. They spent a lot of years analyzing that aspect of me to death, but it didn't help much. Knowing where it comes from doesn't help me figure out how to reach a decent compromise that will enable me to have at least a reasonably happy life. I wrote a letter about this whole dilemma a few years back to a physician who knew the person who was trying to help me find a reasonable job; the resulting discussion only reinforced the insanity of this situation when he proclaimed that I certainly seemed to possess the necessary intelligence to go to medical school. Yeah, now if only my brain would fully cooperate!

kate said...

I really appreciate your putting this out there. I struggle with the same topic in my memoir, and I was always so fearful about writing about it. I think you raise such valid and important questions here, ones that many of us, as preemie parents and nonpreemie parents, can relate to and understand.

Dollymama said...

I just found your blog tonite, but this post is very similar to something I could have written...right down to the dog dying! (ours was hit by a car and died while I was taking the final descent into can't-turn-back-the-preemie-is-coming).

I also wonder why God gets the credit for the good things, but we're just supposed to rationalize the bad things.

My preemie is now 7 years old, but the thing about God that I remember thinking as we went through all we did, was that the main reason I was still believing in God was because the alternative was more than I could bear.

7 years later I'm still asking questions, still sometimes feeling a "crisis of faith" as I call it.

Sharee said...

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