Sunday, July 22, 2007

HOPE

According to Wikipedia, hope is defined as:

Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope implies a certain amount of perseverance — i.e., believing that a positive outcome is possible even when there is some evidence to the contrary.


When my water broke (at 23.0 weeks), a neonatologist told us that Paige would never be normal if she was born before 26 weeks. When she was delivered at 25.5 weeks, I hoped he was wrong.


It was that hope and my insane need to prove him wrong, that drove me to do what ever I could to improve her outcome.


I hoped she would walk.
She did.

I hoped she would talk.
She did.

I hoped she would escape RSV.
She did.

I hoped she would escape hearing loss.
She did.

I hoped she would escape blindness from her ROP.
She did.

I hoped she would eat by mouth.
She did.

I had other hopes too. But, I had to learn to allow myself to alter them as time went on. I grew to respect the honesty of the above mentioned neo. He told me my options and gave me real information on outcomes.

Recently I was told that the information being discussed on my blog is taking away hope from new preemie parents. I respectfully disagree.

Being educated on the possible long term issues related to prematurity should not take away the hopes you have for your preemie. Knowing the possibilities allows you to be informed.

Let your hopes drive you. But don't stick your head in the sand and ignore information that may be beneficial in the future.

73 comments:

terri w/2 said...

PE you are correct. Hope needs to be balanced with reality. Sometimes though, hope can be a dangerous thing, as it thwarts the grieving process that families go through when their preemie has obvious issues. In that sense, hope then becomes a barrier to the child (and family) being able to receive appropriate help.

Hope in the "catch up age 2" phrase is very much false reassurance for families, and is a cardinal rule taught the first semester of nursing school. Why it is so often ignored in the NICU is a curious thing. Micropreemies sometimes may catch up by 2, but most often do not, if at all. Hope in this case perpetuates the denial stage of grieving.

Helen Harrison said...

Professor Steven Pinker recently wrote :
"[It]is hard to imagine any aspect of public life where ignorance or delusion is better than an awareness of the truth, even an unpleasant one. Only children and madmen engage in 'magical thinking,' the fallacy that good things can come true by believing in them or bad things will disappear by ignoring them or wishing them away. Rational adults want to know the truth, because any action based on false premises will not have the effects they desire."

For more of Pinker's essay go to
http://www.suntimes.com/news/otherviews/469317,CST-CONT-danger15.article

Preemie Mom said...

Hope is a good thing but sometimes it can be blinding. I do think, at times, PE your blog can scare the crap out of preemie parents. HH comments are never positive, not that you have any control over that. I try to take what you write with a grain of salt and not dwell on what could happen. I hope for the best for my preemies. But in the back of my mind I know what could happen.

Helen Harrison said...

I am always happy to comment on, and celebrate, the positive when I can do so honestly.

Chris and Vic said...

This is a quote from Reimer Reason blogspot late last week:

“The essence of our effort to see that every child has a chance must be to assure each an equal opportunity, not to become equal, but to become different - to realize whatever unique potential of body, mind and spirit he or she possesses”
John Fischer

So what is our hope for our children? Do we feel they are entitled to some particular outcome?

What is a positive outcome for a child? To live independently? To see? To hear? To be "normal"? To be successful?
What does that mean?

Is hope always a positive thing? Or can it be a crutch? Or can it be associated with denial as Terri says?

I think we may need to reinvent hope, or invent our own personal definitions of hope . . .

What is it we long for? Would we always be longing for something more? What is enough? Is this question our lesson-to-learn?

Chris and Vic

INS Webmaster said...

There is a huge difference between "hoping for the best" and "ignoring reality." Too many, however, don't see it.

20somethingmommy said...

Friends of ours right now are undergoing more extensive genetic testing after they "failed" the quad test-twice. These parents are hoping for spina bifida instead of down's or something else because they read somewhere that things can be done in utero to help the outcome. From what I've read though, that's not the case. Where do we draw the line in our hearts? I remember thinking at 24 weeks that I hoped we would be able to make the decision to let them go peacefully, but at 26 I was thinking I could deal with blindness, I just wanted my children. As time went on I got more and more hopeful.

What do I say to this woman? How can I help her have hope in a situation that at this point, sounds not so hopeful?

The Preemie Experiment said...

I fear that "hope" is actually wishing that our expectations will become reality.

It is our expectations that let us down.

If you do not expect anything, you will be content with any outcome.

If you expect a "normal" outcome, you may be let down.

If you expect a specific turnout, based on what you were told, then hearing any "scary" stats will cause defensiveness.

The Preemie Experiment said...

20somethingmommy wrote: "What do I say to this woman? How can I help her have hope in a situation that at this point, sounds not so hopeful?"

Don't say anything. Just be with her.

Helen Harrison said...

I would be glad to talk to anyone who thinks spina bifida -- and the hydrocephalus that almost always goes with it -- is OK. And the intrauterine surgery ...well let's just say it's a big business that all too often adds prematurity to the problem list.

Be there for your friend, as Stacy said, but if your friend really thinks (*uncomplicated*) Down Syndrome is worse than spina bifida, she needs to get some more informed opinions.

Chris and Vic said...

What if we were told or imagined a best-case scenario/worst-case scenario for our ex-preemies, and then waited for our children to be somewhere on that continuum. That way, we would, with all the flexibility we could muster, place our kids on that continuum rather than placing them at an end-point, a "goal" that we have invented for them.

Health care professionals who have never embraced "anticipatory guidance" are only doing half of their job. As Terri says, you DON'T tell parents that their kids will catch up by age 2--you discuss, over a period of time, in several incremental discussions, what it looks like at various stages along the continuum. You refer them to developmental pediatricians, to on-line or in-person support groups. You have them followed in a follow-up clinic and/or in a Birth-to-Three program . . . You don't set them up for disappointment/failure by telling them everything will be okay.

As a healthcare professional who works with preemies, and preemie parents, I see my colleagues honing their skills in the newest technologies and in anatomy and physiology--but not in bringing the parents along, teaching them the anatomy/physiology, the cares, the future concerns.

Nurses and doctors are NOT natural teachers. In fact, I see very few who are good teachers/good communicators. And I believe that that is a piece of what is missing when families leave the NICU with their preemie graduates, pretty much in the dark about the far-reaching influences of preemie-dom.

One of the few examples that I see of good teaching is the explanations given when parents need to sign some kind of informed consent. Then the docs make a much better effort to communicate and teach.

In their defense, I don't see how the docs and nurses can prognosticate. It is only US, the parents of former preemies, who can give examples of how the future may unfold. It is my experience that docs and nurses do not know this (and that some do not want to know). They would have to go out of their way to know, and they do not. They are there to put out fires--that is what critical care is. There is an adrenaline rush in putting out fires, and that is their thing. (Like watching the drama of "ER".)

Chris and Vic

Miracles said...

I think individuals who see these conditons as being not so bad as others is because of prgrams they watch. I recently watched a program on Discovery Health about a pregnant woman who under went surgery for her unborn childs Spina Bifida. Of course the out come was a success. This is the problem with media. They only show cases that the end result is good. I have yet to watch something where the out come was not.
It is the same with multiple births. They portray the early arrival as scary in the beginning and as the show nears it's end, they show them coming home to live a perfectly healthy life.
I personally think they need to show the other side as well. The side where the parents of the preemie are going to endless doctor appointments, searching for answers on why this happened, and waiting day after day for a sign that their child beat the odds.
The media plays such a big role in how people portray things.
When I look back on my girl's first month's at home I realize now how much I actually missed because I was so caught up in watching for signs of something being wrong.
They never show that part on these shows.
I have yet to see a program which shows a mother sitting beside her child's issolette in tears for months listening to bell after bell go off because their child stops breathing every couple of minutes.

terri w/2 said...

Miracles - you are so correct. The media only wants to tell the happy side - the Cinderella story. Rarely, RARELY is the other side talked about, but if it is, it is still "sandwiched" between miracle baby stories. .kind of like how teachers are taught to sandwich bad news to parents. .start positive, discuss negative, finish with positive.

It isn't too often that there is a true discussion about prematurity being the number one cause of disability, the cause of massive increases in special education costs, the number one cost to MA programs, etc. etc. They don't talk about the 2 year old who's never been home because their lungs or bowel are shot and there isn't enough nursing care to support them in their home. Or about the 20 year old in a wheelchair who needs bathroom assistance at college and can't find it so has to curtail her education. .we should be talking about all aspects to this.

That is why THIS blog is so very very valuable. This blog is creating some balance out there.

Future of Hope said...

Hope is a funny thing. Upon learning of my then 3 day old son's bilateral Grade III/IV bleed, I only had one hope/wish/prayer. It was a very simple one really. I wanted my Son to live, and have the ability to think, reason, and communicate. Alternatively, I hoped for a painless death.

My son grew and thrived. He sailed through the rest of his NICU course with no other complications. Although we did have a no heroic measures DNR in place, that bridge never needed to be crossed. Now 10 years later, my hope has become fact. I have a thinking, reasoning, verbal child, with a full range of emotions, and the ability to express them.

My current hope for my Son is still, in my mind, a simple one. I hope that he will have a fullfilling, rewarding life. I realize that this is not a "hold my breath and wait" type of hope. This is a hope that I have to take an active role in. I have to find the doors, and I have to open them. Forcibly, if necessary. I have to let go of all of my pre-conceived notions of what fullfilling and rewarding is supposed to be. I have to think outside of the box, as it were. I have to have carefully plan out every aspect of life. And still, I have to hope..

The Preemie Experiment said...

My hopes used to be very simple. I hoped that Paige would be happy. Many times I've said, "I don't care if she shovels crap for a living, as long as she is happy."

Funny, that word "happy". Paige does have a full range of emotions but "happy" is one we have to work at. Some days it's easy. Some days it's not. But, we never give up. We take her places, give her positive experiences, play with her, buy her things, even provide medication. But, "happy" is still hard. She realizes it too. She can often be heard saying, "I don't feel happy right now."

You know that look on a child's face when they are so content that nothing else matters? You know the look I'm talking about. It's that look one that can be seen when they are swinging at the playground, or playing with friends. That look is hardly seen here.

I don't want to imply that Paige is always miserable. That's not the case either. Someone outside our home would never describe Paige as a sad child. They would say that she fully embrases life. She does not have a depressed look to her. She also doesn't have that "kid with a happy being" look. "Happy" is just hard to achieve.

I hope it comes easier for her when she is older.

The Preemie Experiment said...

terriw/2 wrote: "That is why THIS blog is so very very valuable. This blog is creating some balance out there. "

This blog is only as good as the brave people who comment here!

Thanks everyone!

Nancy said...

I had a grandma in our support group offer her daughters website. I of course and interested in the outcome of the preemies. 24 wks both grade 4's. As the mom has been going through her journey I had left some comments on her blog. Ones that said my son has a grade 3 and 4 and he isn't blind. Or he his almost walking. The email that I got was that her daughter has no need to hear the "negative" because those things wn't happen to them.

Another mom in the NICU that we were in said upon leaving " He willbe just fine and will have no effect from his bleeds because we didn't get transferred for hydrocephalus like you" Her son is in a wheel chair and has CVI ( in which she claims her son can see just fine.

Hope for me was for me to do all I could to help Tyler and then from there HOPE it was enough. I want him to live a "normal" life. I realize that it won't be what others think of as normal but that is still what I hope for. It's true that hope doesn't mean it will be exactly as we think but we create our own hope for situations.

I appreciate the honesty and it gives me the strength and the ability to write my true feelings on my own blog and not sugar coat the issues we face. It does get flack.

I guess the world doesn't like HALF miracles

Susan said...

As a mom of a 24 week preemie, I remember the horror of being told my daughter needed immediate surgery to place chest tubes after her lungs burst from the pressure of the oscillating vent. I remember how hard it was two days later being told she needed more tubes. I remember how hard it was to put the DNR order on her - she was only 12 days old at the time. And those same doctors expected me to believe she'd be just fine after all that trauma? Just fine after 12 weeks of the roller coaster of the NICU? Who were they kidding? I knew more about the outcome literature than they did.
As a child clinical psychologist experienced in advocating for families of children with special needs I remember how easy it was to tell other parents that they had the right to ask questions and insist on answers, to stay besides their child's isolette when procedures were being performed and to help them say no to nurses and doctors when they, the parents, didn't want something to be done.
My daughter is 12 years old now, and I still have to balance my knowledge of her deficits and strengths. I still have to have hope that her strengths will outweigh her difficulties and that hope helps me keep my patience and tolerance for all the setbacks and curveballs and challenges reality brings us. Helen's reality checks over the years have helped me set a course by which I could plan for my DD and yet still keep hope for her achievements.
take care, Susan

Andrea said...

Terri w/2 said
"It isn't too often that there is a true discussion about prematurity being the number one cause of disability, the cause of massive increases in special education costs..."

Hi! My name is Andrea, mom to a 24 weeker. Also a newspaper reporter working on a long-term project about prematurity.

Terri, could you please point me to some research/stats on the special education costs issue? This could be very helpful to me. Thanks!

Also: I've talked to Stacy about this project, but if anyone wants more info, please feel free to email me at my home email (work one sucks) pantrypuff@yahoo.com

Thank you!

Helen Harrison said...

To Andrea:

Here's one good link about NICU and special ed:

http://www.aasa.org/publications/saarticledetail.cfm?ItemNumber=2548&snItemNumber=950&tnItemNumber=951

Here's an excerpt from a 2003 document (from the public school system in Massachusetts):

"In spite of the districts’ best efforts, costs have continued to increase as districts have enrolled a greater number of children with more serious needs. We found that between 1989-90 and 2000-01 per-pupil expenditures in special education escalated from $6,675 to $12,416, while they increased by only one-third as much in regular education from $4,103 to $6,177. This represents an increase of 86 percent in per-pupil special education expenditures in contrast to a 50.5 percent increase in per-pupil regular education expenditures.

The difference is even more significant when adjusted for inflation. In terms of 1990 dollars, per-pupil regular education expenditures grew by only $405 or 9.9 percent while per- pupil special education expenditures grew by $2,386 or 35.7 percent.

The impact statewide of these increases has been dramatic. As a percentage of total school expenditures, special education spending rose from 17.2 percent in 1989-90 to 20.2 percent in 2000-01—a $202 million increase in special education costs for the 2000-01 year alone. Special education has continued to consume an ever-larger percentage of school district budgets throughout the past decade, while expenditures on regular education declined from 52.3 percent to 47.7 percent of total expenditures. Increased special education expenditures consumed the equivalent of 42 percent of all new state aid provided to school districts since the Education Reform Act was passed in 1993.

During the 1990s, expenditures for special education increased at a greater rate than expenditures for regular education in 88 percent of the school districts in Massachusetts. The impact on education reform is significant. The increase in special education costs exceeded the amount received in new state aid for 88 of the state’s 300 school districts, and 56 percent of the districts statewide spent more than 50 percent of their new state aid on special education.

Some examples:

* Brookline, a highly urbanized suburb of Boston, enrolls almost 6,000 students. During the 1990s, Brookline’s total budget grew by 38 percent, while special education costs rocketed 108 percent. Although the state’s education reform program brought the district an additional $2.2 million in aid between 1993 and 1999, special education costs increased $3.9 million during the same six years. The additional state aid, meant primarily to boost student achievement districtwide, instead offset a portion of the increased special education costs....

In addition, many school districts have experienced significant increases in the number of medically involved students who require nursing and other health-related care. Some of these children are not necessarily classified as special education students, although they often receive extensive services. Some are classified under federal “504” plans for which the Massachusetts Department of Education does not collect data. However, in analyzing the data on statewide health expenditures for school districts, we found that costs increased by 148 percent between the 1989-90 and 2000-01 school years—more than twice the growth in regular education spending during that period.

What is clear from our research is that special education now consumes a significantly higher percentage of most districts’ budgets and a disproportionate share of new funds allocated to public education. Yet the increases aren’t attributable to school district policies and practice, but rather medical, economic and social factors.

Primary among these causes are changes in medical practice. Medical technology has advanced to such a degree that children who would not have otherwise survived due to prematurity or disability now live well beyond their school years. In addition, those whose disabilities would previously have placed them in institutional settings now can enter public schools or private special education schools.

In addition, the medical profession has become better aware of disabilities and how to diagnose them at an earlier age. At age 3 the responsibility for providing special education services is referred to the school district.

Neonatology, the specialty of newborn medicine, has triumphed to the point where premature infants survive at ever-lower birth weights. While this development is laudable, studies have shown a close correlation between prematurity, low birth weight and lifelong developmental and neurological problems.

Of infants born at weights under 3.3 pounds, approximately 10 percent will develop classic cerebral palsy with seizures, severe spastic motor deficits and mental retardation. All will have multiple medical issues significant to the school day.

Fifty percent of children born weighing less than 3.3 pounds will have significant cognitive difficulties without spastic motor problems. Half of these will have measured intelligence in the borderline to mentally retarded range. The other half will have significant to severe learning disabilities.

In Massachusetts we have seen this trend in the enrollment data for early intervention and preschool programs. In 1992, 9,809 children were served by early intervention with 59 percent considered to have moderate or severe delays. By 2002, the number of children being served had increased by 169 percent to 26,339. However, in a more ominous trend, the number of these children with moderate or severe delays nearly quadrupled during those years from 5,818 to 22,661.

Special education preschool enrollment in Massachusetts increased by almost four times the rate of growth of the general population during the 1990s. At the national level, the 23rd Annual Report to Congress by the U.S. Department of Education indicated that the increase for 3- to 5-year-olds in special education during the past decade increased by 63 percent while the increase for 6- to 21-year-olds was 36 percent.

These trends have been confirmed in recent studies in California, which experienced an especially skyrocketing hike in cases of autism. The concern led the state legislature to commission a study by the University of California to examine factors behind the 273 percent increase between 1987 and 1998. The findings of this study confirmed that this was a real increase in autism among the population. The Autism Epidemiology Study did not find evidence that the rise in autism cases could be attributed to artificial factors, such as loosening of the diagnostic criteria for autism; more misclassification of autism cases as mentally retarded in the past; or an increase in in-migration of children with autism to California.

Twenty years ago roughly 2 percent of the school-age population had a medical diagnosis that affected their ability to function in school, both from a cognitive and a physical standpoint. Currently, conservative estimates suggest that 7.5 percent of the school-age population cannot be expected to prosper in school without significant academic and medical assistance."
***
Also of interest is this recent article from the Philadelphia Inquirer on the need for day care centers for technology dependent children:

http://www.philly.com/philly/news/homepage/20070718_Fragile__Handle_with_caring.html

An excerpt:

"Licensed by the state to care for medically fragile children from infancy to 8 years old, [this] facility is one of only two in the city and eight in the state.

More are coming, says Deborah Boroughs, who runs a state program for children at home on ventilators. "They've been popping up over the past two years," she says, driven by dual trends - a nursing shortage and increased survival rates for extremely premature infants."

Helen Harrison said...

To Andrea:

Another article that may be of interest appeared recently in the Wall Street Journal. It doesn't mention prematurity specifically, but it shows the increasing stresses on school systems trying to cope with the increases in disability and the mandates to serve the influx of disabled children.

Hechinger J.
"Hard lesson: 'Mainstreaming' Trend Tests Classroom Goals: Disabled
Children Join Peers, Strain Teachers 'We Need More Help'"

Wall Street Journal, June 25, 2007. Page A1, A12.

[Some data and quotes below]

Nationally, by 2005 (due to mandates of the Individuals with
Disabilities Education Act), 54% of special-education students were
being taught in 'fully inclusive' settings -- spending 80% or more of
the school day in a regular classroom -- up from 33% in 1990.
Meanwhile, 16% of teachers are quitting their jobs each year...of
those, 35% cite difficulties with mainstreaming special-education
students as a main reason for their dissatisfaction.

In Scranton, PA, for example, there are 9,800 students in the
district, 16% of whom are in special ed. About half have learning
disabilities; another half have intellectual impairment, autism, and
emotional disorders. Until 2004, most of these students were in
special education classes. But last year, 70% spent 80% of their time
in regular education classes; up from 28% in 2003.

"The shift has sparked fierce opposition from the Scranton chapter of
the American Federation of Teachers..."In a recent survey of
Scranton's 750 teachers, 2/3 of those responding listed inclusion as
one of their top two complaints. Teachers complain of having half of
their classes or more filled with special ed students and being
unable to meet the needs of either these children (some of whom are
highly disruptive) and the other students. One teacher told of the
difficulties of teaching children in her class who have IQs ranging
from 50 to 150.

Richard Ingersoll, professor of education and sociology at University
of Pennsylvania, commented on the relationship between inclusion,
teacher turnover and the resulting shortage of qualified
teachers: "It's a red flag. Mainstreaming is putting pressure on
teachers and the proponents of this reform are going to need to
address it sooner or later."

Andrea said...

Those are excellent links, thank you!

Sharee said...

For some parents, balanced information doesn't bring power or enlightenment. It brings fear and disappointment. Fear easily steals their hope and without hope, what does a frightened parent have?

While in the NICU with my 24 weeker I SAID I wanted ALL the information available, but my heart really only wanted to know one thing -- will my child live? He didn't.

So, if I were reading this blog while my 24 weeker, Christopher, was still in the NICU fighting for life, I would probably be hissing at the screen, "Robbers, pilferers, thieves -- all of you!"

But during a subsequent pregnancy I was glued to this blog, grateful for every bluntly (and often eloquently) typed word.

So, there is no right or wrong approach to this thing called information... we can't judge those who avoid tomorrow's reality in order to survive today. Nor can we chastise those who are able to face prematurity issues head on.

Ideally, we'd embrace both camps with patience and compassion, not disdain or judgment.

Helen Harrison said...

To Sharee,

We have all (well,at least most of us here) been in the NICU and grabbed for whatever hope we could at the time, and we understand the points you are making.

But we are older now, as are our children.

Do we need to limit our conversations for fear that parents (who come here *totally of their own volition*) are going to be upset with our realities? I *hope* not!

As for what else I hope, it is that my son's 5 1/2 inch still-oozing abdominal incision (3+ weeks after shunt surgery) is not infected with MRSA or some other noxious antibiotic resistant infection.

Also we are hoping that what is oozing from the incision is not CSF (been there many times before!)

Perspectives change, and those of us dealing with very harsh realities should have the right to speak to each other honestly without having to worry that others at an early and innocent stage of the journey might take offense.

Preemie Mom said...

HH said
"Perspectives change, and those of us dealing with very harsh realities should have the right to speak to each other honestly without having to worry that others at an early and innocent stage of the journey might take offense."

I dont think Sheree was saying that you or anyone for that matter doesnt have the "right" to speak about the unpleasant long term effects of prematurity. I am pretty sure what she was getting at is that sometimes "hope" is all that a parent can do to make it through. You dont have the ability to hope or be kind to someone who has a different perspective. You dwell on your sons issues. You use this comment section as your own. Which is wrong. So Helen here we go again think before you jump to conclusions. Get your own blog and comment away.

P.S. Why havent you updated your book?

Anonymous said...

HOPE: Our perspectives

After 18 years, I HOPE one of my preemies doesn't get yet another new diagnosis the next time he goes to the doctor. The latest: kidney stones and gallstones, both secondary to prematurity and possibly due to poor weight gain, rapid weight loss and/or NICU technology.

AND, I HOPE his twin decides to start studying when he enters his freshman year of college in a few weeks!

Rae said...

http://www.essentialbaby.com.au/page/feature_member_july07_agatha.html

interesting article more in line with your blog theme than with miracle prem stories - thought it might interest you

terri w/2 said...

Rae: Excellent article! It pretty much sums up the dilemma parents face - and that even those kids on the "mild" spectrum - if they have multiple mild issues are no longer mildly disabled. .

terri w/2 said...

Preemie mom: I do not believe that Helen's comments to Sharee were meant in any way to be nasty. .she is merely addressing issues that have been brought up here numerous times - and I think several times in this thread even. .that we "seasoned parents" are somehow supposed to temper our comments so as not to upset newbie parents. From what I'm reading - Sharee and Helen are agreeing with one-another!

As far as Helen or others sharing their personal journeys - why shouldn't we be able to do that too? This is, afterall, a blog started by a parent and frequented by parents (and others too). .but mostly parents.

Not being able to share our perspectives honestly would, once again, be negating our lives, and most importantly, our children's lives.

People DO have a choice on whether or not they want to come to this blog. We should not have to pretty things up just because it might be offensive to some people. In addition, this blog seems to have quite a following! PE - have you seen your counter recently?

Helen Harrison said...

To preemie mom who said:

"I dont think Sheree was saying that you or anyone for that matter doesnt have the "right" to speak about the unpleasant long term effects of prematurity. I am pretty sure what she was getting at is that sometimes "hope" is all that a parent can do to make it through."

I thought I was agreeing with Sharee. I, and many of the rest of us, have "been there" too. I *do* understand.

But, having said that I also feel we all have choices on the Internet, and that people who choose to read this (or any other) blog should not be allowed to control the content just to suit their own comfort levels.

You are here by your own choice, and by no means compelled to read anything I write, either.
***

preemie mom also said:
"You dont have the ability to hope or be kind to someone who has a different perspective."

It is sometimes very hard to feel kind thoughts toward people who engage in pointless, relentless, and ill-informed insults toward me, but I do my best.
***

"You dwell on your sons issues."

We were explicitly asked to state our hopes for our preemies. I did so.
****
"You use this comment section as your own. Which is wrong."

If I have something to add to a discussion, I do it, as I have been strongly encouraged to do by "The Preemie Experiment." This is her blog.
****

"So Helen here we go again think before you jump to conclusions."

I might offer you the same advice.
*****

"Get your own blog and comment away."

Where is your blog "preemie mom"?
*****
P.S. Why havent you updated your book? "

A book update is underway, but has taken a back seat to our son's continuing medical crises and other urgent family issues, such as the long illness and recent death of my mother.

The Preemie Experiment said...

Sharee wrote: "So, there is no right or wrong approach to this thing called information... we can't judge those who avoid tomorrow's reality in order to survive today. Nor can we chastise those who are able to face prematurity issues head on."

I completely agree.

There are days when I'm taken off guard at the anger directed towards myself, my blog, and the people who comment here. It's almost like people have hatred to those of us who speak for the other side, the side that it not spoken about in the media. I am not out there yelling at those who are convinced that their child will be 100% fine.

So, to those who read this blog and are offended, scared, full of disbelief, I will understand if you choose not to read or comment. But, please know that we will be here if you need us, with open arms, ready to help, despite the way we were treated by you. It won't be the first time that someone has run away screaming and then come back for help. I understand because I've been there myself.

But please don't be hateful.

One last note. I also feel that Helen's response to Sharee's comment was not negative. I do believe she was agreeing with her.

And, preemie mom, when you wrote (to Helen), "You use this comment section as your own. Which is wrong.", I respectfully disagree. Helen's knowledge is essential to all of us. Her comments, and the comments of all, are invaluable. When Helen feels attacked, she will answer back. I don't blame her. Again, emotions and body language may get misinterpreted in the written word.

The Preemie Experiment said...

Sharee, I forgot to add...

Sending a huge congratulations on the birth of your child! I followed your blog the last big of your pregnancy and was nervous when I saw your friend post an update. Glad to see all is well.

Stacy

Miracles said...

I don't believe that attacking eachother is going to help anyone on here. We are all here for the same reason. We all have had a preemie, lost a child to prematurity, or are pregnant and want to educate ourselves on premature births. Attacking only promotes the "negativity" that has been mentioned on here so much lately.
I myself have said that sometimes I go away feeling depressed from what I read, but I also go away feeling more knowledgeable. I come here to learn of other mother's experiences. Not everything applies to my situation but some of it does. What doesn't, I put in the back of my head and I store it in case something arrises in the future with my two preemies.

We are all very different people yet, we all have the same thing in common...PREMATURE BIRTH.
Women like Helen have been at this a lot longer than myself and a lot of other mother's have. I don't agree with everything she may say, and that's o.k. That's what discussion is all about. That's why were all here to see both sides of the coin. Learn of other's experiences and ask questions to those who have been there done that.

As PE said "Don't stick your head in the sand" I agree 100%. That doesn't only apply to the subject of preemies. It applies to everything in life.

Miracles said...

I needed to add one more thing. Anyone who has had a child born prematue has been through hell no matter what the outcome. I have had friends & family members who have brushed off my girl's being born 3 months early because to them they came through unscathed.

It is those people who need to be educated more on the outcome of premature births. So why not take the info provided here from experienced mother's and pass it on to those who just simply don't know, and educate them. The rate of premature births is on the rise, instead of using your words to attack others, use your words to educate those who do not know. That is what Helen and others are doing are doing.

Nancy Brown said...

Miracles: I have to totally agree. I get the hatred on my blog and it is NOTHING like Stacy's. I even get the Nothing is wrong with him from my brother who is currently in MED SCHOOL. Thats right.. a doctor. Do I have much faith in the medical world.. NOPE. I have great docs but that doesn't mean I full on believe all that they say. Hope is a funny thing when it comes down to that

Helen Harrison said...

To Andrea:

Today's Wall Street Journal has another article about special education, focusing on recent Supreme Court decisions and federal laws that have have made it difficult for parents to get services for their disabled children.

"Schools Beat Back Demands For Special-Ed Services. Parents Face Long Odds Amid Cost Concerns; Seeking a Home Tutor." by Daniel Golden (p. A-1,13)

The article states that the most recent available data on special-ed costs nationwide (from 1999 and 2000)shows that $50 billion was then being spent nationwide, and that sending a child to private school at public expense can cost more than $50,000 per child/year.

Pam said...

My very first blogging comment...

I know you are talking about hope from the medical side, but I want to throw some thoughts out about how it is viewed from the educational side of the coin.

My own experience, as a mom of a 28 week surviving twin and special educator running an EI program is that hope is what allows us to put one foot in front of the other. In my field it is often used as a dirty word to put parents down, along with the other dirty word, denial.

I hate when these are used by EI professionals as a way to dismiss parents as nuts who are unrealistic about their kids. We don't have to wrench all of the hope out of their hearts or damn them for denying the severity of their child's disability. I have never seen a situation where this a constructive aspect of a therapist's realtionship with a family.

I advocate honesty about what we see, honesty about what we have seen the outcome be for other children with similar issues and honesty about the fact that we don't know everything and have no crystal balls. That is the basis for a relationship and over time gives parents a comfortable relationship in which they can talk about their fears and over time revise their "hope" for their child.

Unfortunately, medical professionals either don't have the time or take the time to develop a long-term relationship, nor do some education professionals either, but at least we have more of a chance.

Hope and denial have gotten me through some very dark days.

Karin said...

To 20-something mommy:

I realize these aren't statistics, but I have 2 friends, both adults, with spina bifida. Both use wheelchairs and have had many, many surgeries and difficult times in their lives. One is in her 40s, and an extremely talented artist. The other is in her early 30s, gainfully employed, and owns her own home. The latter of the two had/has hydrocephalus and a shunt. Life has not been easy for them, but both of them are intelligent, capable, and very happy to be alive.

Oh yes, and I knew one other person with spina bifida when I was in college. I didn't know him well so I'm not sure about his medical history, but I can tell you that the university was Stanford.

On the topic of hope, I do agree that it can be blinding. I have CP due to medical malpractice (I wish there was a blog for people like me and our families) and my mother was determined beyond all reason that I would walk, and that my CP would go away almost entirely if I worked hard enough. I had physical therapy for 1-2 hours each day, plus special trips all over the country to see various specialists. All the effort did help, but it didn't give me meaningful walking. It also left me so burnt out from people trying to control my body and my life that after I left home, I refused to do PT for 10 years, much to the detriment of my body. If my mother had set more realistic goals, focused more on independent living tasks, and helped me avoid burnout, I might be better off today. I forgive her, as she was only trying to do what she felt was best for me, and I admire her strength and courage, but I think hope blinded her in some respects.

I don't think statistics adequately tell the story of a person or help much in decision making. For example, they might classify me as severely disabled, since I use a power wheelchair and require help to dress and shower. In those respects I fall within what is expected for someone with spastic quadriparesis. Yet I also have a gifted level IQ, hold a master's degree, and have 100% normal speech. Likewise, a child might be able to walk or dress themselves, but have mental impairment or behavioral issues that greatly diminish their and their family's quality of life. We need to learn what makes some kids have certain problems and others not before we can start making truly informed decisions about an infant's potential.

Anonymous said...

"And we rejoice in the HOPE of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, HOPE."

Romans 5:2-4

Helen Harrison said...

I don't know about you, anon 8:43, but I really don't like the idea of developing character or perserverance through my child's suffering.

I don't see all this suffering helping him much either.

The Preemie Experiment said...

Pam wrote: "I hate when these are used by EI professionals as a way to dismiss parents as nuts who are unrealistic about their kids. We don't have to wrench all of the hope out of their hearts or damn them for denying the severity of their child's disability."

Hi Pam,

Welcome to the blog world!!

The only fear I have, with allowing unrealistic (at times) hope is when their expectation is not realized. The crash seems to be harder.

I agree that some amount of hope is good. I know I wouldn't have fought so hard for Paige to reach some milestones without it. But, for me, unrealistic hope was a huge slap in the face when reality hit. I felt angry that I hadn't just spent the time loving her, but was in "fight" mode constantly.

There needs to be a balance. Like you mentioned, honesty works best. But, I worry that some are sugar coating their honesty too. (not at all implying that you do this)

The Preemie Experiment said...

Karin wrote: "If my mother had set more realistic goals, focused more on independent living tasks, and helped me avoid burnout, I might be better off today. I forgive her, as she was only trying to do what she felt was best for me, and I admire her strength and courage, but I think hope blinded her in some respects."

Karin, thank you so much for your words.

This is exactly what I was speaking about in my commnet above. I spent so much time fighting to get Paige's body to do things that was just not possible. I had hope but no one was honest with me with regard to reality.

Thanks again.

The Preemie Experiment said...

Anonymous 8:43 wrote:""And we rejoice in the HOPE of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, HOPE."

Romans 5:2-4"

Do you realize that, by throwing out bible quotes like this one, you are actually driving some further from religion?

I have enough character. Could you please talk to your God and tell him/her that he/she can stop hurting my child now.

Andrea said...

Thanks, Helen, I'll check that out!

P.E., have you blogged about God and preemies? I feel much the same way you seem to (ie your last post) and would love to see other thoughts on the matter...

Andrea

Anonymous said...

God isn't hurting our children. Suffering exists because there is sin in this world not because of anything God did.

Our children are not being punished for anything they or we have specifically done, suffering is just a consequence of living in a fallen world. But by faith, Christ makes all things new again, in this we can find great Hope and Peace. For we are not alone in our suffering, but Christ suffers with us and for us. He knew suffering beyond anything we could ever imagine and he promises rest for weary souls.

His Ways are not our Ways and His understanding no one can fathom.

MommaWriter said...

This is a terrific topic, PE. It's something I've thought about a lot, but never really sat down to decide what I believe. I once hoped my son (30-weeker) would fly through early intervention with no problems. It pretty much happened that way. And then I hoped we'd really reached that point where he was "no longer a preemie"...so to speak. Then the harsh reality hit. There is NO SUCH THING being born early but outgrowing being a preemie.

Now I have to hope he can deal with his issues...primarily big speech problems and some behavior problems...and become a part of society. I hope he's accepted by at least some group of people and that he knows love and acceptance. And not the kind that comes from a drug dealer.

I guess I'd have to say that, for me, I really need to have some modicum of hope to ensure that I work as hard as I can to get him what he needs. But as one of the other comments mentioned, I also need to be in tune with the little guy, so I don't overdo it and burn him out. I think I'm on the right track with that one...I've already decided we'll quit speech therapy when he starts hating it...'cause eventually his difficulty communicating will make him want to go back.

He's just 5. He's starting kindergarten in a few weeks. I hope that going to school doesn't immediately make it obvious that he's going to have other serious problems.

I like the quote "Hope for the best, prepare for the worst." I don't want to assume he's going to have big difficulties, but I don't want to be blindsided by the effects of prematurity again either.

My biggest hope is that my daughter (31.5wkr) will somehow avoid the kind of difficulties her brother has. She's a very different kid, who had an equally lousy NICU stay as her brother. Maybe she'll manage to float through life a little more easily. Maybe. But I'm not going to hang all my hope on it.

I do think hope is an important coping mechanism. It can lead to denial and that can certainly be a problem, but losing hope? What becomes of us and our children if we have no hope at all?

Stacey (the one with the 'e')

Special Survivors said...

This is such a valuable discussion and I appreciate everyone's honest, thoughtful, and often thought provoking, comments.

For me, HOPE motivates me to do what I can to ensure my son will be able to live a fulfilling life, whatever form that may take. Do I hope for "normal"? I don't think so...although, every so often, I do find myself grieving that which is considered normal. During those early days, when his life was so tenuous, I remember "hoping" that he would just survive, and be able to recognize that he was loved.

I think I have always been realistic about my son's prognosis; but realism does not have to negate hope. They can coexist! And, for the future of our children, they must!

Chris and Vic said...

I am finishing Crashing Through by Robt Kurson, about Mike May, blind since age 3, who had his vision restored at age 40-something.

There is a lot to learn about hope in this book. For example, for 8 months after restortive surgery, Mike "hoped" for better vision. It wasn't coming--his visual cortex was the issue, rather than his eye structures. He then changed his thinking/changed his strategy. Instead of trying to address his weaknesses (visual), he asked himself "What are my strengths?" It was a complicated answer for this man . . . but he then proceeded to rely on his strengths
--his other senses, his memory, his organizational skills (executive function). He took the focus off his visual issues, and found his way, assembling cues by way of his other strengths, and then, as he says, he "filled in the holes" with what vision he had. It worked for him . . . you need to read the book, though, for a riveting account.

From this book, I draw the conclusions about hope:
*** that hope involves not being able to go with Plan A;
*** that hope involves trial and error and other creative solutions and strategies:
*** that you can come to a solution through the back door, so to speak;
*** take Mike May's motto "I'll find a way"'
*** employ curiosity about how this usually works, how it might work, alternately;
*** get people to be straight with you so that you can MOVE ON to Plan B (or C or D).

DO read the book. It is full of alternate looks at HOPE.

Chris and Vic

Anonymous said...

"I have enough character. Could you please talk to your God and tell him/her that he/she can stop hurting my child now."

What a twisted way to view God. I hope that one day you are able to develop a relationship with God that is not hindered by your bitterness and anger. I hope that not only for your benefit, but for that of your family as well.

Anonymous said...

Anonymous July 24, 2007 @ 10:57 PM said...

He knew suffering beyond anything we could ever imagine and he promises rest for weary souls.


Christ "suffered" for less than a day. My son has suffered WAY more than that. I have suffered WAY more than that. I agree, he can stop infliciting pain right now. I have asked, and if I ask, won't I receive?

Anonymous said...

"Christ "suffered" for less than a day. My son has suffered WAY more than that. I have suffered WAY more than that. I agree, he can stop infliciting pain right now. I have asked, and if I ask, won't I receive?"

Wow. I am speechless on this one...truly speechless and greatly saddened. I would love to know your "religious" background.

Helen Harrison said...

Anon 9:25 asks:
"I have asked, and if I ask, won't I receive?"

Apparently not. Anon 10:57's Lord does not appear to be consistently able to grant such requests, since... "Suffering exists because there is sin in this world not because of anything God did."

And this God who has nothing to do with suffering also doesn't seem inclined to stop it either, indicating that Anon 10:57's Lord is either indifferent, or trying to teach us some kind of lesson, or isn't as all-powerful as some of us have been led to believe.

Anon (July 24, 2007 10:57 PM) also assures us that that none of this is expected to make sense when s/he says:

"His Ways are not our Ways and His understanding no one can fathom."

I can only agree.

Andrea said...

Hey, Helen, while you're around:

I'm looking for stats on the rate of disabilities in preemies, broken down by gestation age. Could you refer me to any such studies? Thanks!

AB

Anonymous said...

Anon 9:25 said: "Christ "suffered" for less than a day. My son has suffered WAY more than that. I have suffered WAY more than that. I agree, he can stop infliciting pain right now. I have asked, and if I ask, won't I receive?"

First off, I don't think you are knowledgeable of the life of Christ and his suffering. Were you or your son crucified? Have you lived a life free from sin?

Again, he does not inflict pain. Pain is in the world because we are all sinners.

And yes HH, he is all powerful and could choose to heal everyone if he wanted to. But what's the point of faith if it's easy? If we did not know suffering, we would be unable to recognize and experience joy.

Anonymous said...

Well, I am another Anonymous (only because I wish to protect the privacy of my older preemie on an open forum), and my HOPE is in the comfort that only God can give. True, one of my preemies suffers, as badly if not worse than any ever born. I suffer, but I am thankful to know that God will never leave me. This world is not heaven, and there will be pain. At least, I know my child will be well and whole and living with Christ someday.
As for Christ suffering only a short time physically, yes but it was horrific, and he also took the blame and the weight of the sins of the entire world.
As for quoting random Bible verses here and there, the Bible must be read and understood in context and with the spirit as well as the mind.
And yes, there are many things we humans cannot understand about the ways of an omniscient God.

Len said...

Good topic PE. Curious to know what your first hope was that was not realized i.e. when you were first aware that your daughter was not the same as a full termer other than the obvious adjusted milestones.

I personally like to keep my expectations in check so that I won't be dissapointed but yet I still have immense hope that prayers will be answered. I believe all things are possible. But even if things aren't what we hope for, good can still come from it. There is room for both realism and hope.

While I may not always agree with what others say on here, I hope I have been respectful in offering my opinions.

Helen Harrison said...

To Andrea:

Outcomes of VLBW[<1500 grams and <32 weeks]

This category that has been largely ignored recently in favor of micropreemies, but recent srudies show that about 1/2 have subnormal IQs and need special education. (Another 25% or so have lesser problems.)

Wolke and Meyer. Cognitive status, language attainment, and prereading skills of 6-year-old very preterm children and their peers: The Bavarian Longitudinal Study. Developmental Medicine and Child Neurology 1999;41:94-109.
( Also see the commentary on this study by David Skuse. Survival after being born too soon, but at what cost? The Lancet 1999;354-5.)

This study found that when concurrent term born controls are used to establish valid norms, half of all children born before 32 weeks gestational age have subnormal IQs (equivalent to IQ below 85). The cognitive problems of preemies are global, affect multiple areas of functioning, and appear to be secondary to brain damage of pre-, perinatal, and/or neonatal origin, rather than social origin. These problems with informational processing occur more than 10 times more frequently in preemies than in their term born peers.

****
Hack et al. Outcomes in Young Adulthood for Very-Low-Birth-Weight Infants. NEJM 2002;346:149-157.

This study also shows half (49%) of the VLBW cohort at age 20 had subnormal IQs (below 85).
***
Walther et al. Looking Back in Time: Outcome of a national cohort of very preterm infants born in the Netherlands in 1983. Early Human Development, 2000;59:175-191.

Although only 10% of this national cohort was considered handicapped in infancy, by late adolescence, 40% appeared so impaired that they will not likely live independently. The longer one follows VLBW, the worse the outcome appears. This estimate is based on the need for special education and on the rate of physical, behavioral and learning disorders.
*****

For <26 weekers (who generally are not included in the studies above), the EPICure study in the UK is the most comprehensive source of data. By age 6, 80% of their large cohort had some degree of diagnosed disability.

Marlow et al. "Neurologic and developmental disability at six years of age after extremely preterm birth."_NEJM_2005;352:9-19.

This disability rate may increase and become more severe as these children age. When VLBW preemies are followed further into childhood and adolescence,for example, more problems emerge.

See for example: O'Brien et al. "The neurodevelopmental progress of infants less than 33 weeks into adolescence," _Arch Dis Child_ 2004;89:207-211.

Between ages 8 and 15, IQs dropped by 10 points. While 65% of VLBW were considered normal at 8 years of age, by 15 years of age only 27% qualified as normal.

Anonymous said...
This comment has been removed by a blog administrator.
The Preemie Experiment said...

Anonymous wrote: "OT- I am an IQ specialist- Learning disabilities affect testing if the tester is using one IQ test and not an alternative battery which public schools don't have time for. County programs have far different results. The results of the former are frequently presented with a caveat of not reflecting true IQ if the sp is moderately competent (not always the case). So much laziness in studies!"

Anonymous, if you are checking back, yes I removed your comment. If you would like to email me privately, I would be glad to discuss the reasons. I have pasted the rest of your comment above because I feel it could be relavant.

Again, I pride myself in having a very open discussion regarding prematurity and very rarely remove a post. But, what you wrote could cause others to do the same as you did.

Again, please email me if you want to discuss it further. There are real reasons behind my actions and they are not directed towards you.

terri w/2 said...

Andrea;

Here is a good website also - this one from South Africa on survival and outcomes by gestational age.

http://www.sapreemies.za.org/premature/micro.htm

terri w/2 said...

PE

Thank you for monitoring your blog so well and not letting it run off in the ditch by fanatics.

T

Andrea said...

Helen and Terri, thanks for the studies --

I had seen the one by EpiCure and think that's most relevant for my purposes.

I am so grateful to have found this blog and be pointed toinfo Ineed by such knowledgable people...

Andrea

medrecgal said...

Well, my take on "hope" is this: you can't be head-in-the-sand optimistic when faced with a preemie who has (and may continue to have) any of a number of problems, but you can't be bitterly pessimistic, either. Too much hope could leave a family devastated when it doesn't pan out (e.g., a baby dies or has more severe impairments than was anticipated); too little could leave innocent babies for dead unnecessarily.

As a former preemie, this immediately recalled the times my father and other family members recalled the initial, absolute pessimism on the part of the doctors regarding my potential for ANY sort of life, let alone a vaguely "normal" one. And then when I heard from the one doctor who didn't share this completely negative outlook, I began to understand why debates like this rage (still) over tiny, sick babies. The problem is finding the balance of hope and realism that is right for each case, without deluding families or tearing them asunder. You can't be a cold-hearted, insensitive lout, but you can't raise false expectations, either. It's a fine line to tread, and perhaps I would have been too clouded by my own experience to do it well had I managed to pursue my original dream of practicing medicine. A big part of the problem, IMHO, is that, as I heard one doctor say, you just don't know (whether a treatment or procedure or whatever will have the desired outcome). I think the ability to admit this is something many doctors lack, perhaps out of fear for alienating some kinds of patients, or the "God complex". I would suggest hope is a good thing in moderation in most situations. Without it, the level of despair would be too great for most people to handle.

Helen Harrison said...

Medrecgal said:
"too little could leave innocent babies for dead unnecessarily."

From my perspective, all of our babies are innocent. They are the innocent victims of the same sorts of biological errors and mishaps that lead to miscarriage and stillbirth.

If I were an informed parent facing the delivery of such an innocent baby (especially at/below 26 weeks gestational age) I would ask myself "is it right to subject this innocent baby to an extremely painful, arduous, and inherently damaging course of treatment that will last for months or years and perhaps a life-time, only for the near-certainty of further disability and illness?"

You also say "as I heard one doctor say, you just don't know (whether a treatment or procedure or whatever will have the desired outcome).I think the ability to admit this is something many doctors lack,"

Unfortunately the "just don't know" answer is also a cop-out.

A great deal *is* known about the highly experimental (in the sense of unproven and potentially very dangerous) nature of many NICU treatments. This knowledge should be openly and completely shared with parents.

How many parents are told what neonatologists *do* know about the certainty of brain abnormality before 26 weeks (and probably, to some extent at almost any degree of prematurity)?

Why aren't parents told about the many (ongoing) iatrogenic disasters (steroids, for example) that have maimed so many children for life? Or the "treatments" for which there is enormous uncertainty and many fears (use of oxygen, use of ventilators, various resuscitation techniques, early cord clamping, pain relief, TPN, and so much more).

Parents need to know whatever the docs *do* know, as well as the many questions that remain unresolved. They need to factor this information in with the certainty of pain and some degree of damage into their decisions about their innocent babies.

Parents should also be told that there are some children, (a small minority below 26 weeks, it seems) who come through this perilous medical course with the potential to lead reasonably normal lives.

Parents should, I think, be given all this information and be allowed to decide what course of treatment(palliative comfort care or all-out NICU care) they wish for their child.

Carla said...

My hopes for my daughter have always been much higher than that of my son. The doctors told us from the beginning--ever since his grade 4 IVH--that he would be "very retarded" and not to expect much out of him but don't worry because "you still have one healthy baby". Of course that really wasn't very comforting, but it still gave us the hope that our daughter would be perfectly fine/healthy/"normally developing"--whatever you want to call it. Of course she isn't. So, since we had less hope and expected less out of our son; we celebrated and relished every single little milestone he achieved. With our daughter, since we expected much more out of her when she wasn't doing everything that the other kids her age were doing. I guess the more you expect, the more devestated you will be when everything doesn't happen "just right".

Carla said...

Sorry it's late--that last part didn't make much sense. It should read: With our daughter, since we expected much more out of her; when she wasn't doing everything that the other kids her age were doing, we took it much harder....
FYI--yes our daughter is much higher functioning than our son, but we expected her to be "normal" we only expected our son to be a vegetable...

Helen Harrison said...

To Carla,

We had the same experience with our son. We were first told he was so brain damaged he probably couldn't breathe without a ventilator. So we had nowhere to go but up.

When it turned out that he was able to breathe without a vent, we were told (while he was still in the NICU)that he looked "great" and "at least he didn't have CP." We were also told his eyes were "normal."

However, suring his NICU stay, his shunt became infected and he developed ventriculitis. I asked the neurosurgeon if he had ever seen a child like our son turn out to be "normal." He replied, "Well, normal is a helluva big category...but they have good institutions for kids like this..."

Soon after we took Edward home we were told that he was "blind" (optic nerve damage) and that we shouldn't buy a house with stairs.
(CP was never mentioned to us until age 8 when he needed heel cord surgery.)

At age 3 the developmental specialist at the NICU follow-up clinic told us Ed was intellectually and socially advanced.

Today, at age 31 years, Ed is retarded (IQ 59), has CP --but he does walk and go up and down stairs on his own, is autistic, but not blind, and can see well enough to read big print.

So we, too, have a very mixed track record with the "hope" thing. Generally, we try to keep our expectations modest and realistic.

My hope for the near future is that Ed's incisions (from recent shunt surgery) *finally* heal and that when my brother, sister-in-law, and their two NT boys (ages 10 months and 2 1/2 years) visit us for the month of August, Ed doesn't try pushing his little cousins down the stairs -- his usual reaction to crying, whining children.

The Preemie Experiment said...

Right now, in this very moment, I am sitting here hoping that Paige does not have cystic fibrosis.

One step/diagnosis/day at a time!

medrecgal said...

Helen,

If doctors told parents everything they knew about potential outcomes for a sick preemie, it would likely leave them scared, bewildered, and unable to cope with the sheer amount and complexity of the information. That's why I was suggesting moderation...yes, provide the information, but do it in a way that's helpful and doesn't completely blindside the parents. And there is still much they don't know, aside from all that technical stuff they've come to learn as a result of working so hard to save ever younger and ever sicker babies. What I was suggesting was that for as much as they might know about the "how" of using technology to help preemies, doctors don't necessarily know so much about how a particular baby is going to respond to such interventions. So sometimes saying "I don't know" isn't a cop-out; it's a reflection of the particular situation. I say it's better to have a doctor say, "I don't know" and still be willing to try a treatment or procedure or whatever than to have a doctor say, "The chances this will work aren't good enough, so we're not going to even try it." There is such variability in the outcomes of some procedures that there really isn't a "standard" answer. I know, because I'm living proof. There are times when "I don't know, but I'm willing to chance it" is not only better than "we know this isn't going to work", but it can be a life-saver. I don't suggest, however, that it is the right answer for every situation. I read your posts and part of me says, "So that's why they were so reluctant...". There's no way to know if a particular baby will come through a procedure with flying colors, or whether they will be left with a situation where they are in and out of the hospital for the rest of their life having repeated surgeries. I was very fortunate in that regard; though I have some continuing problems with the cognitive byproducts of shunted hydrocephalus, I have not had further tangles with such surgery. Supposedly the more times that is repeated, the more damage the brain sustains and the harder it becomes to recover, physically and cognitively. So we're just coming at it from very different perspectives, I suppose.

The Preemie Experiment said...

medrecgal said...
Helen,

If doctors told parents everything they knew about potential outcomes for a sick preemie, it would likely leave them scared, bewildered, and unable to cope with the sheer amount and complexity of the information."

Hi medrecgal,

Although your comment was between you and Helen, I wanted to add something.

Yes, parents may be overwhelmed when getting info from docs but they still deserve the information. Nothing should be glossed over. The entire NICU experience is overwhelming anyway. Leaving with false hope or partial information is not fair to the parents or the child.

I do agree with you that docs do not have all of the answers on how a particular child will respond but that is also more of a reason to make sure that the parents know all of the possible outcomes. A simple "we don't know" should be followed by, "some babies have responded this way and some have responded that way."

With all of the discharge papers, that parents receive, there should be a packet on prematurity.

Helen Harrison said...

And this information should also be a part of all prenatal information packets as well!

The Preemie Experiment said...

Helen Harrison said...
And this information should also be a part of all prenatal information packets as well!"

I completely agree Helen. I'm going to devote a post to this topic soon. Everyone has had good tips and posted them in the comments sections of various topics. I want to get them all together under one heading.

medrecgal said...

PE,

Yes, by all means, parents should be given whatever information they need to fully understand their child's situation. How much and at what intervals should be determined by the individual situation and the parents' needs. Some will be better able to absorb it than others, but of course no one should be left in the dark. As an expert you should want to strike a balance between giving parents false hope and scaring the hell out of them...as I heard from my own relatives, families remember when you bluntly tell them their child is either going to be severely disabled or dead, even when that child defies expectations and lives without extreme problems. Truth be told, the "experts" STILL don't know what to make of me, more than 30 years later!