Monday, June 11, 2007

A reader asked...

A comment was left under the previous post that I feel would be better answered if I started a new post.

Anna wrote:

"This is a great post... and I am happy for your success at carrying your son to 35-4.

But I am wondering, you often talk about your advocacy- and I am wondering, what is it for? I know you wish to educate the masses about the real side of prematurity, and I respect that, I do. But what end purpose is in sight? The awareness you deserve? The end to biased coverage of "miracles." Convincing parents not to resuscitate their preemies? You've mentioned Helen Harrison as a "Pioneer"- of what? Shouldn't the objective be preventing prematurity- and isn't that what the March of Dimes is for? And why(yes, I've read through everyting in your blog)- do you/your readers dislike the ambassador families w/ good outcomes.

Please don't take this post as a flame against you or your movement- it isn't. It's not that I disagree, it's that I don't understand.

I guess I just think the parents should have the final say in saving their preemie.-Anna"

Hi Anna,

Thank you so much for the manner in which you asked your questions. Most of your questions have been asked before, not usually as nicely. So, thank you.

Below are the items that I feel need to be changed, with regard to neonatology and the media...

To neonatologists:

Stop telling parents that their preemie will catch up by age 2. This is simply not true for many kids.

Start being honest about the LONG term issues related to prematurity.

Stop using studies that ONLY follow preemies until they reach age 2 or 3.

Start conducting studies that follow preemies through elementary school and beyond.

Start giving parents the option for pallative care.

To the media:

Stop portraying the birth of extremely low birthweight children as "normal".

Start featuring stories of older preemies, and their families, who are living with the day to day issues related to prematurity.

I have been on various preemie groups for 8 years. For many, they've been told that their preemie will catch up by age 2, only to be slapped with reality when their child's 2nd year passes and they are either behind their peers or very different than their peers.

In both the media and medicine, the long term issues that preemies face are largely ignored. On groups geared towards older preemies, a parent will join and you can almost always guess what questions they will be asking. It will either revolve around severe behavior, social differences or sensory issues. Parents are wondering what they did wrong, only to hear that they are not alone and their child's issues are, in fact, extremely common.

As far as MOD goes, they have brought a lot of attention to prematurity. And, I do not dislike the Ambassador families (we were one of them) with good outcomes. Where my problem lies is in the age of the ambassadors they choose. Preemie babies should not be used. How can anyone say that a preemie baby is "normal"? They are too young. The media prints their stories and shows them as coming out of prematurity unscathed. When older children are used, the parents are either not allowed to be honest (because it seems depressing) or the parents choose not to be honest (because they are dealing with their own emotions). It all relates back to how preemies are portrayed.

Helen... I have nothing but the utmost admiration for her. She has been talking about the "hard to talk about" subjects within prematurity for years. I first learned of her while Paige was in the NICU. Hubby and I were given her book and it was comforting to be able to read about all of the subjects that the docs were trying to shield us from. Docs would use terms like NEC and PVL and then, in the same sentence, say "you don't need to understand this now. We'll let you know if you need to make any decisions." We would open Helen's book and become educated about the problems that OUR child was experiencing. We could then have level discussion with the doctors and make our own decisions on care.

Once I joined some on line preemie groups I was thrilled to see Helen posting. She would answer questions and post the abstract to studies that were being published. I learned so much. Some people were not as receptive. I never understood their complaints. Parents would scream and call her negative and say things like, "she just doesn't want any preemie to be saved." I would sit quietly and watch it all unfold. I never spoke up.

As Paige got older and we got a really good handle on what long term issues we were facing, I started speaking up when parents were rude. I was so afraid that Helen would choose to not be a part of the lists. I valued the information she was giving and it had a direct positive impact on the way I was able to care for my child. Due to speaking up, there were a few parents who took out their frustration on me. (I learned to grow thick skin, very quickly-lol) A few years later one of those parents emailed me privately and apologized for her behavior. Her preemie was older and had many of the long term issues that Helen had reported on.

I am thankful that Helen is vocal about prematurity. Many are helped because of her strength.

Since starting the blog I have received many private emails from people who know me from various on line groups. They do not feel comfortable posting about their child's issues but are glad that we are being open and honest and they now know they are not alone. If it wasn't for Helen speaking up, I would have never found my own voice. I am very grateful.

I am also grateful to all who comment here. You received some comments from other parents when you posted your comment to me. I will be copying them under the comments for this post because I feel they are important.

And, as far as parents having the final say in saving their preemie... I completely agree with you. But, they need accurate and honest information before they can make that decision. I hope to be one of many outlets for that information.

Again Anna, thank you so much for being kind in the way you asked your questions. I wish you much luck in medical school. Please feel free to come back and see us again.

Stacy

75 comments:

terri w/2 said...

Anna said:

"But I am wondering, you often talk about your advocacy- and I am wondering, what is it for? I know you wish to educate the masses about the real side of prematurity, and I respect that, I do. But what end purpose is in sight? The awareness you deserve? The end to biased coverage of "miracles." Convincing parents not to resuscitate their preemies? You've mentioned Helen Harrison as a "Pioneer"- of what? Shouldn't the objective be preventing prematurity- and isn't that what the March of Dimes is for? And why(yes, I've read through everyting in your blog)- do you/your readers dislike the ambassador families w/ good outcomes."

Anna;

For me personally, advocacy is desperately needed because prematurity is just not considered a serious issue in the eyes of the media. Everything is eroneously "miracle-based."

Our children are suffering - suffering through the NICU experience (one of my daughters had over 500 heel sticks and a surgery without anesthesia during her 5 months NICU stay). Our children are suffering after the NICU experience due to many varied disabilities - more often the case than not. .cerebral palsy, mental retardation, mental health disorders, blindness, seizures, etc etc.

Currently if the average person were stopped on the street and asked about 1 pound preemies, they would most likely think that everything being done is wondrous and that these babies survive and are normal. Most are not normal below 26 weeks gestation. Families are in desperate need of help in raising these impaired survivors. The divorce rate among families of disabled children hovers somewhere around 85%. Mothers of impaired preemies are forced from the workforce and often into near-poverty due to the necessity of caregiving of their child at home. What a huge unknown women's issue!

The March of Dimes - don't get me started! Ok, I'm started. . .back in the '90's, nearly everything generated by the MOD centered around mothers on drugs and smoking as the cause of prematurity. They even went so far as to publish pictures of baby footprints - one large, one tiny and the caption read "guess which mother smoked (or did drugs) while she was pregnant". .it was SO wrong to peg every mother of a preemie as a smoker or drug user when many preemies are born for reasons that are uncontrollable - twins, medical conditions, and nearly 50% are preterm for no known reason at all. Every woman should be made aware of the danger. The MOD has created a false sense of security among pregnant women as well as needless finger-pointing toward preemie mothers who are already dealing with such emotional pain. Then, there are the poster families, now called "ambassadors" . .carefully selected normal children of extreme prematurity who do not represent the true picture. Again, it tells the average person or pregnant woman - no need to worry here - technology that we support is saving babies who are now all leading perfectly ok lives, aren't we great!

The truth is far different. Because they are not telling the truth about our families, our families needs and most of all our children's needs are hidden from public view.

And yes, parents should have a choice in resuscitation of marginally viable infants. After all, it is us who are the ones providing for a lifetime of care.

Helen Harrison said...

To Anna who said "You've mentioned Helen Harrison as a "Pioneer"- of what?"

Whether I am a "pioneer" or not is for others to decide, but I came to parent advocacy about 30 years ago after our son was born prematurely.

Alone, or with a few others, I did and said many things for first time, speaking from the vantage point of a parent of a prematurely-born child. Many other parents and professionals have helped along the way, most particularly my dear friend and mentor, the late Dr. William Silverman, the "father of neonatology."

I wrote _The Premature Baby Book_ for parents of premature babies (published in 1983 by St. Martin's Press) and was a founding member about the same time of "Parent Care," the first international support organization for parents of premature babies. during the next decade, I wrote for several parent publications (Twins magazine, for example) and published in several medical journals (NEJM, for example) on issues having to do with prematurity.

In 1992, with Dr. Jerold Lucey, editor of _Pediatrics_, I helped organize the first-of-its-kind conference between parents of prematurely born children and neonatal professionals.

As a result of this conference, the first-of-its kind article by a parent was published in the journal _Pediatrics_ [Harrison H. "The Principles for Family Centered Neonatal Care"_Pediatrics_1993;92:643-650]

Together with Jill Lawson, I was the first parent to speak out in a national publication against the widespread practice of unanesthetized surgery on preemies (see Rovner S, "Surgery without anesthesia: Can preemies feel pain?"_The Washington Post Healthtalk_pp7-8, August 12,1986.)

I was an early opponent of postnatal steroid therapy for preemies. I informed parents about steroid use and abuse in the NICU (and in high risk preganacy) on the Internet and in published articles and talks: (for example, "Preemies on Steroids? A New Iatrogenic Disaster?"_Birth_2001;28:57-59)

I am currently one of the moderators of the Internet group NAROF (Neonatology and the Rights of Families) and I am highly concerned about the apparent epidemic of brain damage/autism in our preemies. I am trying to interest autism advocacy groups in looking at the possible connections between autism and prematurity or prematurity-related treatments and toxicity (for example, use of steroids).

To my knowledge the March of Dimes has not been involved in any of these issues.

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 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.

Anonymous said...

Helen--
Thank you for enlightening about your mission. I admire your resolve in parental involvement and certainly agree with the things you listed. I had no idea a neo would perform an unmedicated surgery and am horrified by the thought.

I guess I consider myself moderately educated about the effects of prematurity--I cringed with horror when I heard about sextuplets recently born here in MN at 22w6d (today, in fact)--I read blogs, have done research on the health issues, etc. And I have considered a career in neonatology after nursing.

The many things you have advocated for that you shared with me--your efforts must be working b/c most parents whose blogs I read who have young preemies seem very involved in their care.

I, BTW, am a big bfing advocate. Again, thank you for opening my eyes. You are an amazing and determined woman.

-Anna

Helen Harrison said...

To Anna,

One of the problems with pain control for preemies is that both the pain of NICU treatment, and, it appears, many common pain relievers, can cause brain damage to preemies.

It is hard to know how to negotiate these treacherous shoals, but at least most doctors now acknowledge that preemies *do* feel pain (perhaps even more than older individuals) and that they are permanently marked by it.

I wish you luck in your future medical career, and hope you will continue to consider neonatology.

I did not know about the sextuplets until I saw your post. At that almost impossible gestational age, my heart really goes out to them and their family.

And I am a big proponent of breastfeeding. It is the one major intervention that seems to improve the outcomes of preemies Though I realize the evidence is becoming somewhat mixed on this issue, I remain confident that one of the best family supportive measures any NICU professional can take is to encouraging lactation and breastfeeding and the wonderful physical, emotional and immunologic bonds that ensue.

Thank you for you kind words!

Best wishes,

Helen

Anonymous said...

Helen--

Again, thanks for the info. I should probably mention that I didn't read through the comments when going thru the blog and didn't know you posted here-- I was referencing you as a a well-known far-off famous person- ya know? (although I obviously knew next to nothing about your mission) You are definitley well-known in the neo community! Some say you are negative, some say you are realistic, and some are like me and say you speak for what you believe-- I can't judge, I have no idea what its like to walk in your shoes.

I too am heartbroken for the sextuplet family here--even sadder for them was that another set was born in AZ today at 30w4d. The 23 wkers will likely die or have serious health issues, while the 30wkers (from what I know) will probably have a non-invasive 6 week stay and suffer only minor delays and no long-term problems. I am sure both women did everything "Right"--one's body handled the pg and one's didn't. Its stories like these that make me TERRIFIED to do IF treatments, even though I have PCOS (never fully dxed--but I just know) and cannot likely conceive on my own.

As far as my possible neo-career goes, I currently work on a L&D floor in a suburban hospital--where any mom in labor @ less than 36 wks is sent to children's hosp. in Minneapolis. We have a few preemies once in awhile (almost always 32+wkers) who transfer over once they are "grower's and feeders"--never w/ a cannula/CPAP/brain damage, over having A&B's. And I am to "junior" to handle them. But we are talking about building a NICU down the line to allow Children's to focus on cancer--what they do best. Who knows?

Wow--this was long:)

-Anna

Anonymous said...

Terri--

Thank you for sharing your story w/ me-- I can't imagine the horror you felt at finding our your dd had been operated w/out meds (although, Helen informed me that it can cause brain damage, I'm honestly not that educated on the subject).

You are right, the media is into "The doctor said he would be blind/deaf/paralyzed but he is a genius" type stories-- I guess I just don't believe them b/c I don't trust the media anyway (another LOOOONG story).

I've never been involved too mch w/ the MOD--like I said, prematurity is an abstract subject to me, as I don't have children. I can't imagine how a preemie mom would feel if she saw an ad like that.

It certainly would be more realistic if the media told the whole story , but of course they want to make moola off the rare, exciting stories. I've often wondered why Discovery Health Channel featured update on the quints born @ 32wks but not the quints born @ 24 wks. Is it b/c the kids have disabilities? Of course, I don't know, and to be fair, they did feature a triplet update in which 2 of the families had a child on the autism spectrum. Autism, for some odd reason gets ALOT of media attention (although they usually do not mention prematurity), probably b/c most cases are unknown causes and there are debates over vaxes, TV, etc.

I can't imagine the suffering of families who have kids w/ disabilities--the financial and emotional stress would certainly tear marriages apart.

-Anna

Keith & Sarah said...

Having not read Helen's book, I have one question. I just went on Amazon.com and the only book I can find by her is dated 1983, which we all know makes it beyond outdated in the world of prematurity. Does she have a more updated book? Because if she does I'd really like to read it.

It seriously irks me to hear of neonatologists who don't explain the issues your child(ren) are having. Ours definitely did spout the "caught up by 2" lines (well, it was more the nurses...but I digress) but they always took the time to explain issues to us.

Sarah
http://sydney_lou_who.livejournal.com

Nancy Brown said...

WOW!! Thank you. I get so sick of hearing that he will be just fine. What just fine kid do you know gets glasses before 2, with a almost legally blind RX. What just fine preemie do you know that gets hydrocephalus with a life long shunt, or craniosynostosis from a Toaster head and a resevoir. What kid do you know get a coloboma from a mess up in ROP surgery? What kid do you know who has scars all over his body or skin tears from PICC lines? They are NOT full term kids. But when you mention these little tidbits of info you are just being "negative".

The MOD in my opinion does nothing to help preemie babies. I say this due to my own experience and the part of their advertsing for funds saying we help families of preemie babies. NO you don't. Your research has done NOTHING save some surfactant that I am sure would have been developed without them. You aren't going to stamp out prematurity until you find out WHY they come early. Ask a group of preemie moms and only a handful can tell you why they delivered early.

Stacy, Keep up the honest posts. I would but I hate the hate mail comments I get.

Love Nancy and Tyler

terri w/2 said...

I just read on Yahoo that the 22.6 week sextuplets born in MN range in weight from 11 ounces to 1.3 pounds. How horrific of a situation can a family possibly face? All I find myself asking is why? Why on earth did they resuscitate - especially an 11 ounce *sextuplet* at 22-something weeks? This should be a crime. Shame on neonatology for accepting this as ok.

20somethingmommy said...

Wow, what a post. I honestly don't know where to start. I will start by quoting Helen quickly:

"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."

Helen, I'll be honest and tell you that a lot of times the information that you're handing out is not always something I want to hear, and very purposely I avoided your book after my children were in the NICU because I was all about denial and just surviving through it. But thank you, thank you, thank you for the above quote/purpose. I cannot stress enough that for me nothing was more frustrating and made me feel more helpless than being treated like a child myself while my children were in the NICU. I truly hope that NICU's can begin to understand the value of a parent's knowledge and love and maybe gain some perspective and patience.

Now, many people will disagree with me, I'm sure, but I cannot believe we're in here posting about how "criminal" it was to administer health care to *some* of the sextuplets. What if Brianna or her husband stumble upon this blog? YES, they need accurate information, and there will come a time when they are ready to receive it, but while we can sit here and say, "Shame on the neodocs for trying, etc," we have no right, because they are NOT our children. I have noticed, however, that I really haven't seen too much of the word, "miracle" being thrown around with the media in this case. I guess they're all waiting to see, just like the rest of us.

terri w/2 said...

Since the above comment from 20somethingmommy was directed at my comment specifically, I have to say - how much suffering are these babies going to have to endure to survive? I stand by my feeling that neonatology has crossed WAAAY over the line on this one.

Preemie Mom said...

Terri w/2
How dare you judge the new parents of the sextuplets. Who are you to say what should and shouldnt be done. Shame on you for your "opinion". Walk in there shoes with six little babies and then make informed comments.

Carrie said...

A question I have...
If doctors start being more honest with parents about long term issues of preemies (especially micropreemies), will it change parental decisions? Do parents want to hear this information?
On a preemie bulletin board I frequent, there was an article discussed about outcomes of preemies / low-weight babies. The article said that preemies / low-weight babies are more likely to have health issues as older children and adults, drop out of school and not earn as much money as their siblings who were full-term / normal birth weight. The majority of the parents said, "Not my baby. It must be those parents of low socio-economic status..."
I respect and admire your goals. I hope someday I will find my "voice" to help.
Carrie

Anonymous said...

Carrie,

I was one of the lone dissenters on the other board during that discussion. You are correct in that they ALL attributed issues to the parenting as opposed to a hard start in life. One of the moms said we just need to love our preemies and be positive and they will be ok. My son is 28 months and non verbal. All the love in my heart is isnt going to overcome his start at 25 weeks and the grade 3/4 ivh he suffered. There is nothing I have in my power to change that he has a g-j tube and may never be able to eat like everyone else. Nope love just isnt gonna do it. My education and resources surely must be lacking...

Anonymous said...

You're quite welcome:)

As I mentioned to Helen, I would find it quite rude to judge you for what you believe when I've never walked in your shoes.

I guess I had the wrong impression that most neos are pretty negative. I've heard/read preemie parents say that the neo painted a pretty grim picture for their child, especially after an IVH. I'm sure it varies by doctor though.

I think I read somehwere that the majority of preemies born in the US are born in the 34-37 week zone. Of course THESE children will catch up by age two, if not before. But you're right, an earlier preemie's parents should not be told this when it applies to later preemies. The difference (as you KNOW!!) b/t a 25wker and a 35wker is absolutley monumental. I heard that the rule of thumb is to give kids one year for each month they were early to catch up. Obviously though, a 24 wker still may not catch up by age 4 if they have a disability.

Like I said before, I don't trust the media--the average person, however, is not educated on prematurity and only goes by the miracle babies they see on tv. And who says that these kids are truly normal? You've often said that ppl think your dd looks "fine" b/c her issues are more mentally concentrated. Who says that is not the case for these kids on tv? Of course I am not wishing disabilities on them, and I acknowledge that many kids do come out relativley unscathed.

I stand by what I said before: the answer here lies in preventing prematurity. Whether the MOD has done so is a different debate.

Thanks for taking time to answer my questions.

-Anna

20somethingmommy said...

Carrie was much more eloquent in her comment than I was. She made my point much better than I could have and that is, despite what the docs may or may not have told the Morrison's, sometimes parents don't want to hear it. They can't accept the reality that the lives of their children, no matter how "miraculous" their survival, will be severly compromised. So, Terri w/2, I do respect your opinion and I hope that you see my (and Carrie's, obviously)point.

The Preemie Experiment said...

terri w/2 wrote: "I have to say - how much suffering are these babies going to have to endure to survive? I stand by my feeling that neonatology has crossed WAAAY over the line on this one."

Before anyone judges Terri consider this... many neo's feel the same way she does. They would not save their own child if he/she was born that early. I would love to know the story behind this delivery.

The procedures that these babies will endure is horrific. My heart aches for the parents too. I'm sure they wanted to save their babies. I wonder if the neo's were honest with them.

At this point I cannot judge the parents. The media and propoganda that surrounds extremely low birthweight children is biased. The parents may very well believe that their kids will be normal. After all, that's what is shown in the media! I hope that the kids will be ok, but my experience overrides my heart.

The Preemie Experiment said...

Carrie wrote: "A question I have...
If doctors start being more honest with parents about long term issues of preemies (especially micropreemies), will it change parental decisions? Do parents want to hear this information?"

Hi Carrie,

I do believe that accurate and honest information will make a difference. At this point in time, many parents only hear the miracle stories and may not believe docs. I was one of those parents when my water broke with Paige.

But, there are parents out there that choose not to resuscitate based on the doctors honest information. I have talked with a few of them personally. It's not an easy decision and one that I am glad that I did not have to follow through with when I was pregnant with my son.

Neonatology and the rest of the medical field has not caught up with the gestation of the babies they are saving. It's a very scary time.

Carrie also wrote: "The article said that preemies / low-weight babies are more likely to have health issues as older children and adults, drop out of school and not earn as much money as their siblings who were full-term / normal birth weight. The majority of the parents said, "Not my baby. It must be those parents of low socio-economic status..."

That must be a group that I am not on or I missed that discussion. But, the discussion has been around for years. Give it a few years and those parents will be around the preemie list for older preemies, asking for help.

I don't judge those parents. I've been attacked by quite a few of them but I just wait. They'll be around and I'll be there to help.

The Preemie Experiment said...

Anonymous wrote: "One of the moms said we just need to love our preemies and be positive and they will be ok. "

I have heard this countless times over the years, mostly by parents and others who do not have preemies. I wish I could just hug it all away. I wish I could stick my head in the sand and pretend that my daughter is ok and *poof* all of her long term issues will just magically dissappear!

Sure would have saved us a lot of money too!

23wktwins'mommy said...

It's a tough call. You are pregnant, in love with your growing baby, and you are thrusted into preterm labor.
You want to take in the information you are given and make an informed decision. You want to make the best choice for your baby, but what is the best choice?
If you resusitate you are faced with an uncertain future which will include, at the very least, physical pain for your baby.
If you don't do anything, you are faced with the what ifs. You may run across blogs where parents have former micropreemies who are doing "okay" by your own ethical standards. You cringe with the thought...what if?
Well, at least this is what I imagine would happen.
Helen has responded to my comment that I previously made stating that I thought many people would still choose to resusitate their 23, 24, 25 weekers in spite of medical information including possible devastating outcomes. I believed that, in the midst of preterm labor, when you are given a NICU consult, you would hear there was a chance for survival and that would be the information that would stand out...that's what happened to me at least.
Helen stated that those who had advanced degrees, especially those in the medical profession, tend not to resusitate. Maybe I ignored whatever intelligent knowledge I feel I possess, or maybe it's because the J.D. hasn't been attached to my name yet(I'm just starting law school this fall.)
Either way, I just couldn't see past the "they have a chance." Not while I was in active labor at only 23.2 with my twins.
Would things have changed if I happened upon this blog before I knew I was in labor? I don't think so; and I know it wouldn't have made a difference while I was in labor, which is when most women are forced to make a decision to resusitate or not. Hello...you're IN LABOR...it doesn't feel great. You're panicked and in pain. How can you make the decision to allow your baby to die? Like I said, it's a tough call.
Does this blog help with getting information on long term affects of prematurity out there? It most certainly does. However, I find that most people who read here have already made their decision, or perhaps were never given a choice, but are living life as a parent of a preemie. So sometimes reading about whether or not we should resusitate at such and such a gestational age just doesn't apply to many of us, and it can be disturbing to read that many people think it is unjust to choose life at such an early gestation. Afterall, this was a choice we made before hearing a lot of the studies people cite here.
I can't deny that I don't like some of the information I read here. It makes me worried for the future, and has been known to make me cry. But I'm reading this as a parent who has made her choice; who loves her children and would never wish she had made a different decision, because a different decision would mean that she would never have been able to see her babies smile or giggle. I read for information I may need in the future and to help me try and prepare for what lies ahead.
But, this information and these conversations should be taking place long before you've already made your choice. They should take place before your 2nd trimester. The realities of premature birth should be talked about at your first prenatal appointment. As a healthy, young mother who had spontaneous twins, I never expected to deliever so early...but it happened, and it happens far too frequently, and people aren't prepared.
And as for the mother of the sextuplets, think about this...clearly this mother became pregnant by fertility treatments. This was a planned pregnancy, that no doubt she wanted very badly. Before we throw stones, let's remember, she would have been facing the death of SIX children. It may be easy for you to say what you would choose, but it's easier to stand outside and talk. You're not pregnant with these babies, you didn't feel them move inside of you. And if your upset with the neonatologists, no doubt they are trying to save at least one of these babies, so this mother can actually have the chance to be a mother. It is probably easier in their opinion to try and resusitate and make decisions of continuing care after it is determined how they are doing. Whether it is medically and ethically appropriate, I'm not sure, but I'll bet they have the best intentions at heart.
And in terms of miracles...my twins survived in spite of being born at 23.5. My daughter lost weight and got down to under a pound. My son was given close to a zero percent chance of survival. My twins are young, they are still "cute", and we don't know what the future holds.. Some would argue this taints things. But to me, they are miracles and always will be. They are miracles because they defied the odds, because they are alive, because I feel blessed to have them in my life no matter what.

Anonymous said...

EEK! I wasn't thinking when I mentioned the local sextet-- sorry to start a debate.

23wk twins mommy-- Yours is one of the blogs I love. S & E are such cutie patooties!:)

-Anna

23wktwins'mommy said...

Anna,
Thanks for your kind words. I'd have to agree they are pretty darn cute.
No debate here, just thought I'd add my two cents. I think it's an important topic...the how early is too early? Although it's sometimes tough to hear because my twins were so early and I chose to resusitate.
I just don't have the medical knowledge to make that ethical decision, and I was just guessing why resusitation was attempted in the sextuplet situation. I tend to fall on the side that believes neonatologists do what they do because they are trying to save lives, not trying to make money from the insurance companies to keep the hospital running, like I've heard argued before.
I was't trying to be argumentative...sorry if it sounded like that. I guess I just feel really sad for that family and I know what it is like to be faced with that "choice" as a mother.

Claire said...

To Anna: I think part of the problem is that it isn't necessarily the age of gestation - there are a lot of factors and a lot of "unknowns" There seems to be micropremmies of very low birth weight, extreme prematurity who DO do reasonably well, and infants born at 30+ weeks with quite severe problems. That is why I am adamantly against a cut off date. As for letting parents make an informed choice, giving them an accurate prognosis - that sounds fine, but that certainty isn't really available. It's a bit like saying "Your child may turn into a junkie in adolescence" - well, they might, but what are the odds, please? My heart bleeds for the hopeful mothers of babies who seem to be doing OK at 6 months but who may well have major problems later on. But adults change as well as babies, and the mother who felt she could never cope with a disabled child might actually find that, tough as it is, it is worth doing and bearable.

And I don't think we should EVER judge any other person, or insist we know what is best for them. There are lots of people who think that a disabled life isn't worth living, but I am not one of them.

Anonymous said...

As a neonatologist I would like to respond:
You Wrote:
To neonatologists:

"Stop telling parents that their preemie will catch up by age 2. This is simply not true for many kids."
There are plenty of kids that it is true for though, and as you know, plenty it isn't true for. The EPICURE study shows this too (HH will disagree here, but everyone should read it for themselves and not take one person's word)

"Start being honest about the LONG term issues related to prematurity."
I mention ADHD & learning disabilities when I speak to expectant moms. Other than these two, NOTHING else has been proven. Autism has NEVER been associated with prematurity. Which leads us to....

"Stop using studies that ONLY follow preemies until they reach age 2 or 3."
As a caveat to my above statement, this is partly the problem. However, these studies take more than time, they take major amounts of $$$. Talk to your senator/congressman and get them to increase NIH funding. The MOD doesn't have enough to go around, and your average NICU can't afford to run their own studies (and would it matter...single center studies are not nearly as good as multi-center!)

"Start conducting studies that follow preemies through elementary school and beyond."
I would love to. Do you know where I can get the funding?

"Start giving parents the option for pallative care." Most parents in the middle of a fight will not give up if you give them the option. I choose to tell them "we have done all we can, it is time to hold your baby" with significant head bleeds, etc. Making parents choose life or death is difficult, we need to be better advocates and tell them it is time.

Anonymous said...

PE,
I am a big fan of your blog and your candor regarding your own personal preemie story but sometimes I am frustrated by your assumptions, specifically comments like "Give it a few years and those parents will be around the preemie list for older preemies, asking for help." I am active on the preemie list and yes, many of our children do have issues but some do not have life altering ones and to make a declaration like that isn't straight talk, which I thought was your goal.
My daughter, specifically, was born at 24.1 weeks. She was in the NICU for 4 months, was on the vent, c-pap and cannula. She did not come home on oxygen or any meds. She did not have a brain bleed or any infections. She is a thriving child. No CP, she walks, she talks and eats everything in sight. Her eyes are ROP free, her vision is great, her ears are clear. This is not a 'miracle' story, just my daughters story.
Is this rare? maybe. That could be the caveat here. But to say that all 24 weekers will have life altering issues isn't accurate. I'm not naive, I expect that my daughter will have some side effects due to her early birth but so far they haven't showed their stripes.
This blog is very informational but when you think *you* have the crystal ball to our childrens future, you cross the line.

Anonymous said...

Anonymous neonatologist--

Please correct me if I am wrong, as I certainly don't have the same qualifications as you, but I thought there were MANY other long-term issues related to prematurity:

Cerebral Palsy(PVL?), blindness/poor vision(ROP?), brain damge that leads to hearing loss, cognitive/mental impairments (I would use the "R" word here but hate it), Sensory Integration Disorder, discolored teeth, developmental delays, GERD, poor feeding, chronic lung problems, the tendency toward illness, asthma, and depression are some of the issues I have heard that many preemies are afflicted by.

If prematurity does not cause these issue, why are they more common among preemies?

I'm still learning so much and am curious.

-Anna

The Preemie Experiment said...

Anonymous (3:01) wrote: "I am a big fan of your blog and your candor regarding your own personal preemie story but sometimes I am frustrated by your assumptions, specifically comments like "Give it a few years and those parents will be around the preemie list for older preemies, asking for help." I am active on the preemie list and yes, many of our children do have issues but some do not have life altering ones and to make a declaration like that isn't straight talk, which I thought was your goal."

Dear Anonymous,

I've never said that all preemies have life altering issues. Never. I do believe that ELBW preemies will face one or more of the long term issues that I've talked about. But, I am not saying that they will ALL experience major disabilites.

As far as my comment "Give it a few years and those parents will be around the preemie list for older preemies, asking for help." That comment was in response to Carrie's statement. I am not judging those parents either. I have always been there to help. I was one of those parents.

And, congratulations on how well your daughter has done. My daughter (25.5 weeks) had a great NICU stay also. She does not have any ROP, bleeds, hearing loss, etc. We did not start seeing the other side until she was older. I hope this is not true with your daughter.

The Preemie Experiment said...

Anonymous neonatologist,

Thank you for your comments. I appreciate you taking the time to read.

There are studies that show many more long term issues than you've stated. I promise to list them soon when I have a free moment.

What I write is from experience and a few years of hearing from other parents. My daughter is, by far, not the only one with long term issues.

I encourage all neonatologists to join on line preemie groups that are geared toward older preemies.

Anonymous said...

I just read that one of the MN sextuplets died. As tragic as that is, I honestly think it's probably for the best. My heart aches for that family and those tiny tiny babies.

Chris and Vic said...

PE wrote:

Neonatology and the rest of the medical field has not caught up with the gestation of the babies they are saving. It's a very scary time.

Anonymous neo also wrote that there are not the studies to show the cause/effect.

Notwithstanding well-conducted studies which "prove" cause/effect,
I believe it is WRONG to keep going, as in EXPERIMENTing, to see how far we can push the envelope with saving younger and younger preemies.

Let me make it even clearer: if there is even a handful of preemie parents; if there are a few studies showing a weak link or association between, say, autism and prematurity, we should raise the red flag, step back, warn parents of a "possible link" and warn them firmly and convincingly.

The assertion that PE makes, about neonatology not having caught up with long-term effects or possible long-term effects is an important factor here. Docs are NOT going to red-flag parents if the studies are not done and if they fail to believe in the anecdotal accounts they hear about or read on the blogs, like this blog, or on the preemie lists that parents frequent.

The docs I work with do not warn parents; even the preemie follow-up clinic shrinks back about scaring parents and making them worry. They do not believe us, who write about our everyday lives with our ex-preemies. Or they don't listen to/read our accounts.

Hey, any docs who are reading this
---please tell me why you don't believe the accounts you read? Why do you want to believe the best, that experimentation with younger and younger gestational ages can only be good? You want ONLY to believe the studies because you are scientists and these studies are the only real evidence of good science?

Here is my take on it: even if the studies are the only solid evidence of good science, the researchers have still not spent hours or days in the home, dealing with the behaviors, setting up the g-tube feeds, dosing out the meds, mixing the formulas, doing the nebs several times/day. So the scientific studies do NOT give the true picture of the wearing-down effect of raising a preemie, getting him/her through the day. So to me, those wonderful studies are sorely lacking . . . they do not present the day-to-day reality.

I started out to try to answer Anna's questions about "why". Others have done a much better job.
The only answer I have left for Anna is that if we don't shine the light of day on preemie issues, as Stacy and Helen and Teri do, and as the preemie lists do, then we marginalize the preemies and their parents. In some cases, we are outcasts. In my case, my child's behaviors frighten other children. He has no boundaries, and his over-friendliness and his wanting to hug everyone he speaks with, is off-putting even for adults. We are "in this world but not of it," and sometimes it feels like being outcast.

I am willing to be outcast with my son, Vic. It also wears me down. Existing on the fringes of society takes its toll. Vic is not a fully-functioning memeber of society; and I have to hold myself back from many venues in society for his sake, to stay with him and keep apace with him. Not the least important area where I must hold back is that I cannot take a full-time day job within my profession, because I cannot find day-care for Vic---and have never been able to do so in 12 years. Terri saying that this is a women's issue is a little discussed fact. I remain marginally poor in order to raise Vic and give him all the attention he requires, all the coaching, all the teaching, all the supports.

And the future is actually quite bleak, because Vic will never live independently and I am not sure I can provide for his future when I am gone. It isn't only a matter of finances, which is a major issue, but it it is also a matter of him being in the world and not of it with no strong advocate for his life. I cannot say enough about how this part REEKS!
Chris and Vic
P.S. Doc, it is not just funding for research, it is the "political will" to face the issues and confront all the important players
---docs and medical schools and follow-up clinics included.

Anonymous said...

C&V,
I'm surprised by your tone. I have read and agreed with most of your comments here and on ND's blog. Why do you blame neonatology? What you seem to "reek" is our cultures inability to support children with disabilities and their families- please correct me if I'm wrong. Unless you are saying the the dr's should have given you a resucciation choice at some point along the way- it seems as your disappointment should be more geared towards society than neo's.
As far as neos warning about autism et al...truthfully, I dont think a warning alone would cause parents to think twice about saving their babies. I mean really, seeing how autism is found in one in every 10 boys now do you think full term moms should abort their boys? This logic seems crazy..you and PE are stretching on this post.

Anonymous said...

I just read the comment from Anonymous to Chris & Vic. I don't think Chris is "blaming" neonatology for society's inability to provide adequate support to disabled people and their families. I took her point to be that many if not most neonatologists and others in the medical field do not give parents a full assessment of their preemie's future. Part of the reason may be due to their fear of parents' reactions at such disturbing news, and part may be due to their denial that many preemies really do have future medical, psychiatric and mental problems. I say this because of my own experience with neos at one hospital who glossed over my child's multiple disabilities compared to neos at another hospital who told us the truth. It was a shocker, and they were right. I also say this because of relatives in the neonatology field who say that some neos prefer not to inform parents about the severity or even possibility of brain damage in their preemie babies.
I disagree with that approach, because if the child was older, if the patient was elderly or with any other circumstance, the parents or closest kin would be informed of present condition and possible long-term outcomes.
True, there is no way to know exactly what an outcome may be. But there are current statistics and plenty of anecdotal evidence. We learned about the possible outcome for our other preemie son when the residents made rounds, and students were given way more info than we ever were.
And Chris, I understand what you mean about being "outcast." I have been there much longer than you have. It isn't just the disabled child who is affected but the entire family. Life shouldn't be that way. If you have never read Dream Mom's blog, she tells the lifestyle of the disabled and their families quite poignantly.

twinsx2 said...

It’s been a very hectic month and I, as always, will ramble. First of all I think that Helen’s list of “what she’s for” should be the mission statement of NAROF. It’s what we are about on that list. Maybe it could explain our mission and those who choose to accept it, or portions thereof, would have clear and concise talking points.

Clear and concise is not what I’m about unless I rewrite several times. No time. DH got a new knee last month so I have had to do it all. Then my mother died almost 2 weeks ago. It’s been a 5-year struggle with Alzheimer’s and she hasn’t known me for the last two. But what struck me was how the medical personnel listened to me when I told them to stop.

In a nutshell-got a call, she’s sick. Conference with the doctor-treat at the home. Call back, she’s too sick, taking her by ambulance to hospital. So, I drive to the hospital to meet the ambulance. When they finally come looking for me, I think that they are hooking up IVs, getting her settled, etc. I mention to the nurse on the way through the ER doors that I want a DNR on her. She says that they have been doing CPR for 40 minutes. (I couldn’t get a DNR on file before because the home wouldn’t accept my signature and they wanted her doctor to witness her signature. He refused since she was incompetent. I was her court ordered guardian as well).

I tell them to STOP. I am the daughter and the decider and here is my paper work to prove it. She’s 85, 4 foot 10 and weighs about 80 pounds. What are you thinking? OK, I know they had to do some but 40 minutes? And you know what? They stopped. Just like that. Imagine if I had come into a NNICU saying STOP, what are you doing?

However, note to ER personnel-when you send in social workers, etc because you want to help me with my “feelings”, it might be helpful to cover up the BODY! While the Medical Examiner is trying to talk to me, the social worker wants to call “someone” to support me, registration needs the insurance information, and “oh by the way someone is bringing down refreshments” (I swear to GOD, they did!); it might help if my dead mother is not lying half naked with an intubation tube sticking out of her mouth not 10 feet from me. Get a sheet for cryin’ out loud.

23wktwins'mommy said...

Very interesting, I read one commentor mention that there had not been an update on the quints born at 24 weeks. Well, I just turned on Discovery Health and they did an update. The five children almost-4-year olds- were running around, throwing balls, and talking up a storm.
There is going to be another update featured on Tuesday at 9pm Eastern time on Discovery Health, called Quints Revisited.
From what I could see 3 of the five have glasses, and none appear to have CP.
Just thought might be interested in tuning in.

Anonymous said...

Yup-- that was me. Time to put my foot in my mouth!

-Anna

BTW-- Of course, I was merely discussing the media's usual attitude toward the normalacy of ELBW children, as Stacy discussed in the post. I NEVER meant anything but the best wishes for their family...but I feel terrible for even making those
a$$umptions.

chris and vic said...

To Twinsx2:

I am sorry about your mother. At about the same time, MY mother was taken from her nursing home by ambulance to a local community hospital, suspected of dehydration. Very weak. Somnolent when I got there. Had "we" not intervened (it was I, as her healthcare POA, that gave permission for her to be transported, in concert with ER personnel who immediately started her on IV fluids). In retrospect, I am thinking I should have let her go--that is, NOT intervened. She was in no pain and she would have slept away---which is the kind of death I would wish for myself.

Like your mom, my moom is in the 5th year of extreme dementia/Alzheimers. As such, she had no fear. She wasn't anticipating pain nor death. She is just always in the moment with her Alzheimers. What a good time it would have been to let go. But we dragged her gack and perhaps the next go-'round won't be as pain-free and "easy".

So, I really mean to say that I am with you in your decision, and in your assertiveness. I am glad the medical people listened to you. It is our call---because we are the ones who love our elder mothers and have stayed connected to them.

I know it is not only hectic--it is sad, even though you know you were right-on. For that, I am sorry. For the loss you feel, I am sorry.
Chris and Vic

twinsx2 said...

I read where a 2nd sextuplet in MN died. I think 2 of the boys have passed away (2 of 4). We all know about wimpy white boy syndrome so it's not unexpected that it was boys who passed. However, the parents are 24! Since when do you do fertility treatments on 24 year olds who had only been married just over a year? We are running amok!

Anonymous said...

A third boy died today, leaving one boy and two girls.

Anonymous said...

I understand, and admire all of TPE's goals.......

the only thing that gives me pause is that Paige's entire medical and psych history is in such a public forum. We know her problems passing her stools, we know of her thoughts telling her to harm her brother, we know she has problems socially with her peers, etc. I can't help but wonder how she will feel about this in a few years.

I'm not sure how I would feel having my mom publish such information about me on the internet for all to read and discuss, even if it was for a noble cause. Even if our last name was not used. I think that might be one reason there are not more older preemie survivor ambassadors being candid.........I'm sure privacy for these children is an issue.

I know that not using Paige's life in detail would detract from the message and make it harder to get it across. I also understand that by bringing to light the long term effects of prematurity, it will in the long term benefit Paige. I feel torn of late when reading this blog, supportive of its message, but hoping that Paige's best interest is not lost. I hope you have counsel much wiser than mine to help you decide what is best for her.

daedalus2u said...

I think that what causes the preemies to be preemies in the first place is the same thing that causes all (other than caused by specific injuries such as bleeds and ROP) the problems that they have later.

I think a lot of it is tied up with nitric oxide physiology.

Anonymous said...

That's a big statemetn daeldalus2...do you own stock in iNO?

annaliese said...
This comment has been removed by the author.
daedalus2u said...

Inhaled NO won't work.

I suspect (but have not been able to do any tests) that autotrophic ammonia oxidizing bacteria are a part of the normal vaginal flora. I suspect that it is the loss of these bacteria that is responsible for the association of BV with preterm delivery of low birth weight infants.

I think (but have no data to confirm it yet) that one cause of preterm delivery is the absence of these bacteria.

Yes, I do own stock in a company that is trying to commercialize these bacteria for treating and preventing various disorders.

chris and vic said...

It isn't very often that someone works/thinks/researches HARD on the preventable cause(s) of prematurity, so I thank daedalus2u for his focus in that area. Where is the March of Dimes with respect to paying attention to the preventable causes of prematurity? To say that getting prenatal care will prevent prematurity is grossly misleading. To say that there is an association between cigarette smoking and prematurity is not enough. I would hope that the MOD is monitoring all the research, monitoring the support lists, monitoring the blogs like this one, so that they get a lead, like the one that daedalus is providing---and then follow up.
This warm-fuzzly org (MOD) is taking credit for caring---but they need to put research funding where their media bliz-y/glitzy claims are!
Chris and Vic

Anonymous said...

I know the Morrisons personally, though we have not been in touch since shortly after they married. I have to say "bless you" to those asking not to judge them. While I have my own feelings on whether or not they made the right choices, I am not walking in their shoes, nor feeling the horror of watching one's children die, one by one. I have no right to judge them; only to decide for myself what I would do if I were in their shoes. If anyone wishes them to be punished for their choices, consider that they cannot possibly hurt more than they do now. Castigating them will do no good. Besides, as any parent knows, they will second-guess themselves. There is no choice you can question that they will not find themselves questioning more. Let them grieve in peace. And if the three remaining babies make it, do not sap what strength remains to them; they may have a long and grueling journey ahead of them with these babies, and bitter words will only make the road harder.

That said, it is most certainly time people started to understand that prematurity is not a good thing. Preemies can survive and turn out fine; I know some personally who are happy, healthy adults. But preemies more often do not turn out fine. Especially so young. I suspect that a lot of fertility clinics are not being honest and open with their patients or even themselves when it comes to the limits of their abilities.

Anonymous said...

One more thing: I do know that the Morrisons were aware of the risks their children faced. It must have been devastating to learn that they were coming so early, because they would have known what that meant.

annaliese said...

I absolutley agree. When I say I "cringed with horror," I mean that I cannot imagine the devastating losses that are inevitable in a 22w6d delivery. One of our state newspapers (The Star Tribune) ran an article a few days back about mulitple pgs, risks, and reduction. The Morrisons, of course, were pulled out and their situation was given as an example of why reduction should be chosen.

Plain and simple: The female human body is designed to carry ONE baby-maybe two. No one tries for a sextuplet pg, but even when precautions are taken when going thru IF treatment, it still happens, and parents are faced with heartbreaking decisons about what they should do. While some of us (and I mean that in the broadest sense) would have made a different decison in their shoes, we should not judge them for taking what they believed to be the right path.

Friend of the Morrisons: Should you be in touch with them, please send my greatest condolences.

-Anna

terri w/2 said...

Anonymous said: "If anyone wishes them to be punished for their choices, consider that they cannot possibly hurt more than they do now."

I disagree - being a caregiving parent is a life-long grieving process. Watching your child suffer every single day is worse than what the Morrisons are going through right now. At least, and I don't mean to trivialize those parents on this list who have lost their precious children due to prematurity, but at least they can find some semblance of peace in knowing these babies are no longer being tortured in the NICU, or face a life-time of surgeries and rehospitalizations to try and fix the unfixable.

The Morrisons truly did not know what they were getting themselves into - who wants to get pregnant with 6 and then deliver at 22 plus weeks - I do not think that is the intent of our discussion at all. I do not feel as though this discussion is in judgement of them as much as it is a discussion about the horrific misconceptions that surrounds extreme premature "miracle babies".

And to the anonymous neo that posted regarding telling his parents about ADHD and LD - the CDC now states that prematurity is the number one cause of developmental disabilities - mental retardation and cerebral palsy are mentioned specifically.

Anonymous said...

Me wonders if the anonymous neo is really a neo at all.

annaliese said...

The article:

http://www.startribune.com/1244/story/1250470.html

And two I just thought were interesting about the AZ sextet (30w4d):

http://www.tusconcitizen.com/daily/local/54706.php

http://www.tusoncitizen.com/daily/opinion/54826.php

Perhaps the media is changing its tune a bit? (Although one of the articles is more about the implications of prematurity/multiples on the health care system and on our taxpayers. And of course, 30 weeks is a pretty long time for 6...)

Best wishes to their family and for their preemies.

Enjoy...

-Anna

tbonegrl said...

I just found your blog and I am eating it up. Thank you.

Helen Harrison said...

This is what I get for trying to go on vacation!!!

I've just returned from an idyllic couple of days on the No. Cal. "Lost Coast" and find my preemie son (age 31 years) in the throes of shunt failure. He sometimes emerges from these "spells" without recourse to surgery, but this is the second major episode this year, and somehow I doubt we'll "luck out" again.

As to the "neo" who tells us that some <26 weekers are "caught up" by two according to EPICure, I fail to see any evaluation in these studies for "caught up by age two," unless you mean the disability categories. I would suggest (and I'm sure others with preemies will agree) that not having a diagnosed disability at age two is not the same as having "caught up."

As for autism not being related to prematurity: there is a large, longstanding, and *growing* body of evidence showing that it *is* related.

I have cited and quoted from these studies on this blog and others, and will do so again if anyone missed it. Also, see the sizeable body of evidence on schizophrenia and childhood schizophrenia and prematurity.

annaliese said...

Helen--

Do you know why autism is related to prematurity? I thought it was caused by the brain being differently wired- and that would be present at birth, no? Or that is was caused by mercury toxins in vaccines- are preemies more susceptible b/c of neurological immaturity? I've read some research, but it all seems very confusing to me. And many f/t babes get it too- 1 in 150 girls and 1 in 100 boys. It's a scary epidemic, and unlike polio, can't be captured and cultured in a tube.

Hope your son gets better soon.

-Anna

Helen Harrison said...

Here are *some* of my cites and notes...there is much more.

Larsson et al. Risk factors for autism: perinatal factors, parental
psychiatric history, and socioeconomic status. _Am J Epidemiol_ 2005;161:916-925.

[Study suggests that there are genetic factors that can lead to autism; also
gestational age <35 weeks; short gestation can lead to autism. These factors seem to act
independently. In other words, there are several paths to autism, either
genetic or perinatal.]


Sumi et al. "Sibling risk of pervasive developmental disorder estimated by
means of an epidemiologic survey in Nagoya, Japan." _J Hum
Genet_2006;51:518-22. "

[Families with autistic children run a higher risk of having another child
with autism, indicating genetic causes. However, families whose autistic
child was born prematurely do not run a similar risk of having an affected
sibling, indicating another factor (perinatal brain damage?) was at work.]

Wilkerson et al. Perinatal complications as predictors of infantile autism.
_Int J Neuroscience_2002;112:1085-98.
[five perinatal factors were found to significantly predict autism --
prescriptions taken during pregnancy, length of labor, viral infections,
presentation at delivery, and low birth weight.]

Halsey et al. Extremely low-birth-weight children and their peers. A
comparison of school-age outcomes. _Arch Pediatr Adolesc Med_ 1996;150:790-4.
[one of the first longterm studies of ELBW preemies, this is the first one I
can find that mentions autism among the handicapped survivors]

Cederlund M et al. One hundred males with Asperger's syndrome: A clinical
study of background and associated factors. Dev Med and Child Neurol.
2004;46:652-60.

[there were high rates of prenatal and perinatal problems, also genetic
factors; often both]

Knobloch and Pasamanick. Some etiologic and prognostic factors in early
infantile autism and psychosis. _Pediatrics_1975;55:182-91.
[high incidence of low birthweight, complications of pregnancy and the
neonatal period,seizure disorders, etc.]

Laviola et al. Social withdrawal, neophobia, and stereotyped behavior in
developing rats exposed to neonatal asphyxia. _Psychopharmacology_
2004;175:196-205.
[Rats exposed to neonatal asphyxia exhibited autistic type behaviors, and
had findings on autopsy suggestive of poor performance of dopamine pathways.
These findings suggest an increased risk of developing social withdrawal,
neophobia (fear of novelty), and behavioral stereotypies (common symptoms found
in schizophrenia and autism) as a consequence of neonatal asphyxia in preterm
humans.]

Maimburg and Vaeth. Perinatal risk factors and infantile autism, _Acta
Psychiatr Scand_ 2006:114:257-64.

[high prevalence of low birth weight among autism cases]


Lee DA et al. Childhood autism: A circuit syndrome? Neurology 2003;9:99-109.

[The authors examine the evidence that autism is not a single disorder but represents dysfunction of the cerebellolimbic circuitry which can arise from many different etiologies including prematurity. Interestingly, MRI studies by Terrie Inder are showing widespread cerebellar abnormalities and damage in preemies.]

Greenberg DA et al. Excess of twins among affected sibling pairs with autism: Implications for the etiology of autism. _Am J Hum Genet_2001;69:1062-7.

[And why might twins -- identical and fraternal -- be more likely than singletons to be autistic? could it be prematurity?]

Couchesne E et al. Hypoplasia of cerebellar vermal lobules Volkmar and Cohen. Neurobiologic aspects of autism. _N Engl J Med_ 1988;318:1390-2

[More evidence of cerebellar involvment]

And here is a recent study on adolescents born at very low birth weight (<1500 grams)
found disturbed white matter connectivity throughout the brains of these former
preemies. The researchers particularly noted disturbed white matter in the
external capsule and superior fasciculus, white matter tracts connecting
regions implicated in social cognition. This is identical to findings in
(non-preemie) adolescents with autism.

The preemies studied here also had high autism symptom scores, though
apparently none had been officially diagnosed. It may be, the researchers
hypothesize, that preemies have a milder (or some cases, not so mild) disturbance in
brain growth of the same kind that leads to autism in non-preemies.

The initiating cause of autism may be the physical insults to the brain from
prematurity and NICU treatment, or from the prenatal causes of the
prematurity itself (for example, infection or inflammation) or from NICU treatments
such as being on a ventilator. Genetic factors (and apparently there are well
over a hundred different genes implicated) may help modulate or intensify
the reaction to these stresses, as is apparently the case in ROP or BPD. The
study is Skranes et al. "Clinical findings and white matter abnormalities
seen of diffusion tensor imaging in adolescents with very low birth weight"
_Brain_2007;130:654-666.

annaliese said...

Thank you!!!!

Helen Harrison said...

Another (newspaper) cite before I go to bed -- in hopes that we can make it through another night before the trip to UCSF for shunt surgery...

Rosetta L. "Study: Low birth weight, C-section risk factors in autism" _The Salt Lake City Tribune_2/08/07.
http://www.sltrib.com/Search//ci_5184585

terri w/2 said...

Thank you, Helen for this information - very interesting! I'm always, ALWAYS amazed at people who claimed to be stunned at this information and want to believe that tx in the NICU cannot possibly be responsible for brain abnormalities leading to the autisms and mental health issues in our preemies.

I'm amazed because when you are pregnant, all you hear about is the developmental stages of pregnancy, and how the last trimester is known as the time when the brain is developing the most/fastest. Well, if this is true, and it probably is. .if these fetal brains are developing sometimes for 4 months or more of the latter part of the pregnancy - well into the latter part of the SECOND TRIMESTER - being constantly assaulted by light, handling, noise and pain multiple times on a daily basis for MONTHS - does it take a rocket scientist to realize (I guess it does!) that this tx during a time when the neurons are growing and migrating at their hightest level might just be hugely impactful on these kiddos down the road? I believe this is exactly why so many of our kids without IVH's are so disabled with the softer issues - mental health problems, aspergers, NLD.

Which brings me to another point now that these sextuplets are in the news. .back when the Dionne quints were born prematurely (in the 1930's, I believe) - I seem to remember reading that several of those girls also had mental health problems and I think one even committed suicide. Being that they were identical, wouldn't it show that perhaps prematurity was the culprit and NOT genetics?

Anonymous said...

I love all this information. As the mom of a 24 weeker I find it very helpful and enlightening and great dialogue for dr's appointments. BUT...other than being enlightened and informed I'm not sure what you (helen, TPE) expect parents to do with this information. If it is just to inform and educate us, than THANK YOU! If you are trying to tell us that we made the wrong decision by saving our ELBW babies...than shame on you! I'm often confused by your tones...are you being helpful or slapping us on the wrist? Since it's a blog tone is hard to diagnose but it seems that you feel that this research should have guided us to a different path. I knew most, not all, but most of side effects of prematurity when I delivered at 24 weeks. I had been in the hospital for weeks and had much time to make my decision. I let my baby decide. I followed her cues at birth...apgar of 8 at 5 minutes..and will follow her cues through childhood and adolescence. The information you share is very helpful so keep it coming but know that you aren't changing many parents minds about saving *our* ELBW babies.

daedalus2u said...

I have read a great deal about autism and ASDs. There is zero evidence for mercury or vaccinations being involved. A good source for autism is

http://autismdiva.blogspot.com/

and other bloggers on the autism hub. The "mainstream" media is very poor with a number of "mainstream" journalists being sources of disinformation (i.e. Kirby, RFK Jr).

http://scienceblogs.com/denialism/2007/06/autism_crankery_at_huffpo_agai_1.php#more

My perspective on ASDs is that they are evolved features (of all humans), most strongly expressed as a consequence of exposure to maternal stress in utero. At my blog I have a lot about it (with more to come).

I have have not read as much on preterm birth, but I suspect that some of the "reasons" for it are also stress related, and also mediated by low NO. I would expect to see effects similiar to ASDs. (but there are notable differences).

Autism is, to some extent, a diagnosis of exclusion. Once you exclude everything else, what is left is called "autism". If a preemie has another diagnosis, they won't have "autism" as their primary diagnosis. That doesn't mean they don't have it, just that they have something else to a greater extent.

I think the "details" of when the exposure to "stress" (and so low NO) occurred, determines the "details" of what the outcome is. Development and neurodevelopment are simply far too complicated to be able to figure out cause and effect when they might be separated by months or even years.

It is well known that stress in utero programs the adult physiology of multiple organs, liver, kidneys, heart, endocrine, etc. It would be surprising if it didn't have effects on the most important organ, the brain.

terri w/2 said...

Anonymous of the 24 weeker above. I do not believe that any of us are trying to tell parents that they made the wrong decision. This site, and correct me if I'm wrong, PE, is to inform parents, neo professionals, the media and even the general public, that there is another side to the prematurity issue that is not all roses and miracles. Many of our children are suffering in endless, countless ways, and it's being swept under the rug in favor of the happy Cinderella outcomes.

Our kids under 26 weeks represent the majority of preemies who will have on-going issues, mild, moderate and severe, yet this is a side that is rarely discussed, or if it is, is poo pooed as basically unimportant. Our children and their issues are monumentally important.

Parents are never told they made the wrong decision here, just that there is more to the preemie story, and perhaps knowing that there *are* issues among this population will help not only our children receive better care (due to knowledgeable parents!) but enlighten others to help prevent these issues to begin with.

I for one am deeply concerned with the suffering many of our micro preemies have endured in the NICU and beyond, but especially the NICU. I believe, and I'm speaking personally here, that there are worse things than death, and knowing what I know now, would never have entered the doors of a hospital with an NICU to deliver my twins.

Anonymous said...

terri w/2-
if you can give me one name of a dr or even a hospital in recent years that resuscitated a baby at 23 or 24 weeks over the parents request for a DNR, I promise you that I'll make sure that dr and hospital get reported. That just doesnt happen anymore. Parents ALWAYS have a choice. How old are your twins? surgery without anesthesia is a thing of the past.
how do you know any child won't suffer...full term or preemie. And what about full term babies born with autism and downs, maybe you think they shouldnt be aborted?

Helen Harrison said...

To anonymous:

I could give you many names of numerous families whose 23 and 24 weekers were resuscitated and treated over their documented objections. Several of these cases have made it to court and been well-covered in the press (Messenger, Miller, Montalvo-Vila, etc.)

Had I more time this morning...but we are taking our nearly comatose *suffering* 31-year-old preemie son into UCSF med center for shunt surgery.

I am not trying to tell anyone their decision was wrong. I just want every family to be able to make well-informed decisions in this area of extreme and controversial medicine with its high potential for severe life-long pain.

Anonymous said...

To Anonymous who said that "parents ALWAYS have a choice in the resuscitation of 23 or 24 weekers:

Are you in the medical field? How do you know that this happens at every NICU and with every OB?
Does the Baby Doe or Born Alive laws not affect 23,24 weekers? If not, how do they determine the cutoff?
The NICU went to superhuman, extraordinary lengths to save the lives of my preemies, but that was going on 20 years ago, and they never asked our opinion.
In fact, we pretty much had NO SAY in any of their care even though OUR insurance paid hundreds of thousands of dollars and their care cleared all our savings for co-payments and procedures that insurance did not cover. I can't help wonder what would have happened if we had not signed their forms. I wonder what would have happened, if instead of having catastrophic insurance and money in the bank, we had been destitute.
I am thankful for my children's lives, but I believe that if the government or NICU makes parents' decisions for them, then the government or hospital should pay the medical bills and the cost of keeping the disabled children at home with the family. And by the way, comparing FT babies who are born with genetic disabilities to premature infants who develop disabilities as a result of being born too soon is irrelevant. We aren't talking about FT babies. Extreme prematurity is a whole different situation. These babies are not nearly completely developed, and that is where the controversy lies. For whatever reason, preemies are treated more like the PROPERTY of the NICU and not the children of the parents.
Then when they get older, doctors, hospitals, schools and the media are in DENIAL that these kids aren't normal. There is no such denial for children who are born FT with genetic disabilities.
I welcome blogs such as this, because I once fell for all the stuff that my "normal" preemie would catch up. Funny, he never gave us any hint that he thought he was "different" from others his age, until one day he saw a magazine article about bipolar kids, read it, and said, "That MUST be what is WRONG with me!" He was EXCITED,even RELIEVED to discover the information, although he is not truly bipolar...more like ADHD.
Our other son, however, developed severe, multiple disabilities due to extreme resuscitation efforts. 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Lisa said...

A little OT, but, Stacy, have you seen Anne McDonald's website?

http://members.optusnet.com.au/%7Eanne.mcdonald/Anne_files/Anne_If%20We_Keep_Babies_Alive.html

Very interesting.

terri w/2 said...

Wow Lisa - fabulous link to the Anne McDonald site. Quite the article. .I remember a few years back when I was searching out options for my daughter who is severely disabled, medically fragile, nearing adulthood. .I visited an institution in my state that is renowned nation-wide, as it housed a sibling of JFK. Gotta be good, right? As I said - I was exploring options of care for when I could no longer care for her at home. . It was pretty horrific - cracked, peeling paint on the walls, old, old buildings, people who were vegetative lying in recliner type chairs. I was stunned by the contrast between this world where I'm sure preemies like my daughter end up at least sometimes, and the glitzy, high-tech world of the NICU that refuses to believe an institutional world like this one exists. .or even that children like my daughter result (too frequently) from extreme prematurity. Anne McDonald hit it on the head with this article.

Also - I found this info today while doing a search for the latest on the remaining MN sextuplets. .the article by ABC news has been reprinted from info off the AP, I believe, however, this was among the comments on the article. I've posted to the site for this nurse to contact me, but so far, no go. Anyway, here is part of what her comment on the preemie sextuplet birth said:

"I am a neonatal nurse and am one of the ones who end up caring for these babies that are born so premature. People think that we (medicine) can work magic and save their babies- but we can't save them all. Instead we put many babies born extremely premature (less than 26 weeks gestation) through torture while they try to fight for their lives. Neonatal medicine has come a long way, but there are still babies that we can not save and still more babies that "live" but have many long term problems such lung disease requiring them to be on ventilator, neurological problems that result in them not being able to care for themselves/walk/talk/and in essence are a vegetable, blindness, deafness, and not to mention a tone more possibilites."

Pretty profound. .

The Preemie Experiment said...

Anonymous (June 20th at 7:56) wrote:" BUT...other than being enlightened and informed I'm not sure what you (helen, TPE) expect parents to do with this information. If it is just to inform and educate us, than THANK YOU! If you are trying to tell us that we made the wrong decision by saving our ELBW babies...than shame on you!"

Dear Anonymous,

Never once have I placed blame on a parent. Never once! If you can find one single place on my blog where I purposly inflicted guilt on a parent for saving their child, then please point it out to me.

I don't often get upset by comments and private emails in response to my blog, but being told "shame on you" got under my skin.

I also chose to save my child, despite being told the outcomes. One neo told me the truth but when we changed hospitals, the other neo's told me that she would be fine and that I shouldn't listen to the previous neo. I can't say that I would have been able to make any other decision than I already had, but that is because I only saw the miracle stories. After knowing the truth, 7 years later, I chose to create a plan if my son was born early.

I don't hold onto any guilt and I don't place any guilt either.

If anyone feels guilty after reading my blog then they need to look inward and move on.

The Preemie Experiment said...

I've been MIA lately due to family visiting that I only see once a year.

But, I wanted to take a moment out to say thank you to everyone who has posted and provided some great links and info.

I'm still reading, just don't have much time to answer. I promise to be back soon.

Elizabeth said...

Helen said:

"I am not trying to tell anyone their decision was wrong. I just want every family to be able to make well-informed decisions in this area of extreme and controversial medicine with its high potential for severe life-long pain."

The only problem with this, Helen, is that the people reading this blog are people who have ALREADY made their decisions. It appears you are really trying to reach parents who have not yet had a premature birth, in an attempt to enlighten them were they to encounter such. No?

annaliese said...

I think that's terrible. If I become a neo, I will try my best to allow parents to make those decisons.

I vaguely remember a neo saying he felt "wrong" about not resuscitating a 25 wker, b/c "80% of them survive"--yet it should ALWAYS be up to the parents, for they are the ones who must, as Terri said, provide a lifetime of care if their child sustains health problems.

24 weeks seems like the standard "viability" time to begin resuscitation these days. 23 weeks, in my observation, is highly debated (and becoming much more acceptable). I've never heard of a neo who recommended saving a 22 or lower wker--save the doc in Florida, who treated the 21w6d lil girl (but at her parents' wishes).

I was talking with my mom about this once, and she told me that, back in her day, (50s-60s) it was considered taboo to save 28 weekers, that their outcomes were poor. And now, it is considered taboo NOT to save a 28 wker- and most of them do well and have a good shot at a "normal" life. I wonder, what will the future be like in this respect? I can't even fathom saving a 19-21 wker, and yet, in my mom's day (she too was a nurse) they couldn't fathom saving 24-26 wkers. Today, we do it w/out question.


But back to my original point. The choice to save a preemie is up to that preemie's parents. If a hospital has a certain policy regarding resuscitation (and I have no issue w/ these policies), the parents need to be informed early in the p/g, so that they may decide if they are comfortable w/ that policy.

Just my humble opinion...

-Anna

ex-preemie said...

I'm uncomfortable posting on blogs.

I'm not a fighter. They said I was. and it wasn't true. I was never "clinging to life". I was anchored here instead of being allowed to go home.

I'm scared. I don't want to spend the rest of my life like this. Can anyone help me? Is there anything out there that can help with the more distant long term issues?

Privacy is an issue. I learned that my body and personhood were not my own, and that I was the sum of my problems. I would mind if my mother made such a blog containing my personal details, and make sure it was removed.

The Preemie Experiment said...

Dear Ex Preemie,

I am sorry for your feelings about life. There is a group on yahoo for former preemies, called "former preemies" that may be helpful for you. The link is on the front page of my blog.

As far as my daughter's feelings, if she found out about my blog... I have been a part of on line groups (for parents of preemies) since she was born. On those groups, information is shared and parents are helped by others that have "been there done that". Without those groups, parenting my child would have been a lot harder. It was also there, on those groups, that I learned that I was not alone. There are many blogs out there, written by parents of former preemies. This is our support system.

My daughter, as of late, has also been very open about her early birth and subsequent long term issues related to prematurity. You should have heard her speak at a function when she was 6! And, when she is around other preemies, she has a wonderful way of leading discussions. When she is infront of doctors, she is candid and asks for help.

I realize that she is only 8. If there ever came a time that she did not want me to speak about her personal stories, I would absolutely honor her request.

ex-preemie said...

I didn't realize you had been in contact with online support groups over a period of years, and I understand how important this is. My own parents didn't have the support system that exists today. Your daughter's experience and my own are different. I can only speak for myself, and in the future, your daughter may not mind your blog, but it's good to know, if she does, you'll respect that. I'm glad she's so assertive about her health and well being!

Helen Harrison said...

I'm typing this by Ed's bedside at UCSF. He is going into surgery in an hour or so with two teams of surgeons -- a group of neurosurgeons to handle the ventricular part of the shunt replacement, and a group of abdominal surgeons (who also did his marathon SBO surgery in 2004, a complication caused by adhesions from previous shunts).

The difficulty today is that his numerous shunt revisions and SBO surgery have left his abdomen so scarred, so full of adhesions and hernias, that placing another peritoneal catheter may be impossible, in which case it will be placed next to his lung or in a vessel leading to his heart -- options with their own sets of gruesome complications.

Once again, we feel like we're watching my son die by inches.
***

To Elizabeth who said:
Helen said:

"I am not trying to tell anyone their decision was wrong. I just want every family to be able to make well-informed decisions in this area of extreme and controversial medicine with its high potential for severe life-long pain."

The only problem with this, Helen, is that the people reading this blog are people who have ALREADY made their decisions. It appears you are really trying to reach parents who have not yet had a premature birth, in an attempt to enlighten them were they to encounter such. No?
***
I didn't bring the topic up on this blog. Others did, asking my views, and I gave them.

****
To keith and sarah who asked about future editions to The Premature Baby Book:

One has been in the works for some time but has been interrupted by Ed's surgeries, my mother's long illness and death, my own health problems, our house repair/remodel and the heavy work load of the co-author -- Sandy Gardner, RN, PNP, who is busy with other neonatal texts and lives far away.

But stay tuned...

Meanwhile, I've kept my hand in writing med journal articles, giving talks, blogging and working with NAROF.

Chris and Vic said...

To ex-preemie who is scared about long-term issues:

I have been thinking about you a lot. Because I also think of my son re: the same long-term issues.

Here is what I imagine for my son for the future (best-case scenario):
There is a social services agency in the are, Lutheran Social Services, which has an agreement with some assisted living facilities. The agreement is that LSS can place 2 young adults with developmental disabilities together as roommates in an assisted living apt. A LSS caregiver visits them daily, or weekly, or every other day (or whatever their needs dictate) to help with activities of daily living; transportation; shopping for and cooking food; paying bills, cleaning, etc. The caregiver enables them to live independently in their apt and carry on, all very individualized. I hope I can get that/arrange that for my son, when the time comes---when he is out of school, perhaps. Or whenever I can no longer care for him due to age, infirmity or death.

Check it out for yourself. Ask a school counselor to check it out. Or your family--ask them to check it out on your behalf, if you need to.

The options may be slim---but then again, a creative individual, along with a determined family, can CREATE options that were never imagined before.

It is way too soon for you to give up---you have just begun to seek, to stand up for yourself, to fight.
You go!!!
Chris and Vic

ex-preemie said...

To Chris and Vic:

I would like to consider assisted living as a last resort. I always worried about proving incapable of living on my own, and the thought of it is disenheartening. Thank you for your thoughts.