Sunday, January 11, 2009

The Importance of Statistics

We've discussed statistics and research on this blog in the past. (If I was better at labeling my posts you'd be able to quickly access said discussions. :) I'll fix that soon.)

When we've had these discussions we end up talking about how the statistics are needed in order to discuss NICU care and decisions. Today I want to talk about how parents, who are raising preemies, need the research and statistics.

In the past I've talked about having a name for all of the conditions that seem to be common in children born premature. Recently Liz tackled this topic on her blog. As you can see from the beginning comments, people cannot handle when a preemie parent is honest about their feelings and struggles.

Statistics are not only important when talking about NICU decisions and care but they are also needed post NICU.

The reality is that there are preemie parents out there who have had their children removed (or threatened to be) due to failure to thrive. To the opposite, other parents have gotten great care from doctors who explain to them that the failure to thrive label is not their fault and occurs in some preemies.

Parents who bring their preemies to many doctors, begging for help for all of the issues that are not explained to the them in the NICU or by their pediatrician, run the risk of looking like a Munchhausen's case. Yes, it happens. To the opposite, there are the doctors who have read the research and statistics and know that there are many issues that preemie face and realize that it is not uncommon to have multiple specialists involved in caring for a preemie.

What about family/friends/neighbors who think you are simply not raising your child the right way and that is why he/she acts so different than peers?

In the January 1st edition of the Journal of the American Academy of Pediatrics an article was posted... Psychiatric Morbidity in Adolescents and Young Adults Born Preterm.

I was immediately saddened yet happy at the same time. Saddened that our kiddos deal with so much yet happy that other parents may not have to go through the disbelief on the part of the medical system, as we did. Paige is not the only preemie who has dealt with mental health issues. We have a good team in place now. They don't judge us, as parents, or say that we simply weren't raising her correctly. They know that prematurity can play a role in the mental health of a child.

Now, I am not saying that prematurity can be blamed for every ailment/condition that a former preemie may acquire. But, when you have a group of conditions that *seem* (that one is for you Clay) to be common, it needs to be looked into. So, to those who are compiling the statistics and writing the research... please keep it coming!

I want to add one more personal comment... I am not, by any means, saying that prematurity needs to define you into your adulthood. It was brought to my attention that some adult preemies who have escaped some of the long term issues feel uneasy about how they are doing. I have never heard this personally. To the opposite, I have gotten emails from adult preemies who have thanked me, and the others on the blog, for discussing the issues. It allowed them to no longer question what was going on in their bodies and minds.

I can assure you, Paige's prematurity does not define her. She does not walk up to strangers and introduce herself as a former preemie. But, the long term issues that her body endures, secondary to prematurity, does dictate how she feels every day.

20 comments:

thethomas said...

Stacy,
Thanks for the article link.

I linked back to Liz's blog and (it shouldn't any longer but still am)was surprised at the nastiness. I was the first comment so did not see them before today. It just so annoying. I would SO LOVE to have a label that fit for Josh.

Anyway, thanks for your blog. I always get a lot out of your posts.

Christy

Anonymous said...

Helen Harrison writes:

Thank you Stacy! If anyone is interested in the entire study, email me at Helen1144@aol.com.

The scary aspect of this study is that it was done on preemies who survived in the early 70s, and very few, if any, micropreemies survived then in Europe -- the study is from Sweden.

Micropreemies are much more impaired in all dimensions. So expect the percentages given in this study to rise considerably with time.

Also, new treatments (steroids, etc) may be increasing the poor outcomes in more recently born preemies.

One study (cited on this blog) recently showed that 1/4 of very low birthweight (<1500 g) preemies were now testing positive for possible autism in early evaluations!

Then there is the fact that in order to be counted in the Swedish study, the children/young adults had to be *hospitalized* for their psychiatric disorders. How many of us deal with our children's severe psych problems at home without hospitalization?

I have just scanned Liz's blog and continue to be amazed at the denial some parents espouse. Unfortunately, parents who want to show the world only the most positive face of their experience often shout out the rest of us who want a more balanced, reality-based discussion.

It sometimes seems that anyone who dares to tell the truth, in all its aspects, as Liz did, is bound to be guilt-tripped and intimidated by people who can't cope with anything beyond "cotton candy."

No wonder there is so little public awareness of the problems of prematurity -- and so little help for our children.

Helen

Sarah said...

Helen writes:

"One study (cited on this blog) recently showed that 1/4 of very low birthweight (<1500 g) preemies were now testing positive for possible autism in early evaluations!"

My son is one of these! I won't go into extreme detail about it here. Feel free to link back to my blog and peruse the last few months' posts.

Anyway, what I found from family and friends was refusal to accept that he may be autistic. What I found from the medical community was refusal to accept he may not be.

I wish there were more studies on preemies peroid. I have been told that my son's incessant vomiting is 'nothing more than an inconvenience.' Yet, why is it I can found literally hundreds of preemie moms who understand the vomiting?

I guess it would be nice if people would quite trying to convince me that I had a miracle baby and I should be joyous for his life. I am! I cherish every moment that I have with him. That isn't what this is about. It's about getting help that HE needs, specifically geared toward preemies. I just don't understand why discussing his issues causes people to shut down. No one wants to hear it.

Anyway, long-story now long, his full autism evaluation turned out to be negative. But isn't that a problem in and of itself? Clearly there is something about his behavior that 'raises concern,' yet no one seems to be able to pin it down.

Sarah Blake said...

Hi, Stacy.

Thanks for posting this. Since I was the one who made the comment about prematurity not defining me, I should say that it was a poor choice of words. I don't know anyone whose whole life is defined by prematuriyt. I do sometimes perceive a tendency among adult preemies (and my perception may be incorrect) to question whether every little personal detail is related to prematurity. I admit that I have a fairly strong issue with this since I have so many genetic issues that look much like preemie issues.

I missed the other blog discussions--I don't read many other parent blogs... It is appalling to me that doctors are misinformed and don't provide parents adequate support.

Eleanor said...

Stacy,

The dreaded FTT issue is such a huge one and one so few understand or even really try to. I ran into someone at church on Sunday who had never met Thomas before and on a brief description from my mother said to me that he'd grow, just in his own good time. I simply told her it was a little more complicated than that.

Later she told us about her grandson who had psych issues around food due to his reflux - yet she's still handing out the trite answers! I was tempted to ask if her grandson was a prem...

Anonymous said...

Helen Harrison writes:

To Sarah, who wrote: "Anyway, what I found from family and friends was refusal to accept that he may be autistic. What I found from the medical community was refusal to accept he may not be."

My own view is that the many traits that are considered "autism," (and those that don't quite make the cut), are somewhat arbitrary and could apply to most people with brain damage (for example, adults who have strokes).

The vast majority of preemies have brain damage or brain abnormalities when they are examined on MRI. I think this damage/abnormality manifests itself in different ways in different children, although there are some common features (sensory issues, poor motor skills, for example, which are also common among adult stroke victims).

There is a spectrum of disability in which definitions are not always very useful.

Definitions such as "autism" do not really help, except in terms of eligibility for certain services, and a child who is eligible in one state (or at one clinic) will not necessarily make the "cut" in another state or clinic. These labels can also change over time.

The labels our children do (or don't) receive don't really change the reality we -- or our children -- must deal with.

Helen

Anonymous said...

I personally don’t need a label for my son. A label doesn’t fix the problem or even help others understand. It has taken a while for me to finally accept that my reality is mine alone. I view his birth and outcome and never ending issues based on my limited life experiences and religion. I can not make others see my reality. The more I tried, the angrier I became. Even with other NICU parents. Because of the many stages that survivors of the NICU go through. Survivors are not only the preemies themselves but their families. The many stages are denial, blame, fear, envy, mourning, bargaining, anger, guilt, isolation and flight. Flight is my favorite because it makes me feel that if I can just find the right therapy or right doctor and then everything will be fixed. I can’t help it. Cinderella was my favorite fairy tale when I was a child. And apparently that may lie the problem with the medical community. They want to wish for the happy ending, instead of acknowledging that these children suffer from a variety of ailments, illnesses and conditions that full term babies do not. What bothers me most about the NICU is the good luck mentality and lack of follow up. Because if they would just do some testing before the child is discharged, the parents could leave with valuable information to help raise their child. A family history workup and genetic testing should be mandatory. Lots of parents of preemies don’t know that whatever rare conditions that are in their family tree are at a higher than likely chance to pop up in their micro preemie. Just to name a few: Autism, Bipolar, Cystic Fibrosis, Dyslexia, and Gall Bladder Disease. I didn’t mean for my comment to be so long but sometimes these blogs get me all rattled up. And side note, I do see the importance of diagnosis codes for medical insurance reasons. With everything said, may you find peace in whatever stage you are in and patience for others that are in different ones.
Tammy

Anonymous said...

After re-reading my comment, I realized I left something out. My reason for not fighting for a label like EPS (extreme preemie syndrome) is because I don’t think umbrella labels really help. It doesn’t help others understand your child’s individual issues. The range is too big and that causes doctors to validate only those that fit the extreme of the mold. Examples of umbrella label problems: Autism Spectrum, Bipolar, Dyslexia and CP. I prefer specific diagnosis like hypotonia. That’s all.
Tammy

Anonymous said...

What helps, I think, is a better understanding by physicians, teachers, family members and the public that premature babies have problems with...well almost every organ system in the body.

Others need to know that these are not because of "parenting" issues. Instead, our children behave the way they do, and have academic, social, psychiatric, motor problems, gall bladder issues, liver problems, kidney stones, kidney failure, cardiac issue, skeletal and dental abnormalities, lung problems, autism, cancer, vision loss, hearing loss, eating problems, digestive problems, failure to thrive, and so on and so on... because their brain and other organs were interrupted and damaged at a crucial state of development, and they do not recover fully, if at all, from it.

People need to *see* and understand the brain scan abnormalities that are found in the vast majority of preemies, and they should understand how these problems get worse as gestational age at birth decreases. They should also understand that these injuries can worsen (brain injuries on scans and in behavior/cognition) with age.

They should know of the permanent loss of normal development in the kidneys, lungs, bones, and other organs that researchers are now amply documenting.

What people choose to call all this is of little importance (to me at least), but people do need to know that it is all directly related to prematurity as well as to some of the medical interventions used to treat premature babies.

Surviving preemies are brain injured (for life), and kidney injured (for life), and lung injured (for life), and metabolically injured (for life) --also bones, teeth, immune system, endocrine, liver, etc., etc.

Of course, not every preemie manifests injuries in the same way or to the same degree, and some are able to lead fairly normal, healthy lives, but the majority do not -- and it is not the parents' fault.

These problems not something parents make up for attention. They are real, they are physical, and increasingly they are measurable, and have been proven by research.

One mother -- either on this blog or on the preemie child list -- was told by her child's neurologist: "[At 25 weeks gestational age at birth], the question is not 'is your son brain damaged?' Instead, the question is: 'how badly?'"

(Insert any other organ or organ system into this quotation.)

This is what the world must know about our children if they, and we, are to be dealt with compassionately and sanely.

Helen

Kristie said...

I 100% agree about the need for more research and numbers, and perhaps better labels. Although, in the end, I think the label would be more helpful to me than her. That way when people ask me about her, I could just say "she has ___" and leave it (mostly) at that.

I find increasing trouble interacting with parents of healthy kids, as an overall distrust of physicians, vaccines,pharmaceuticals, etc continues to grow. My (term) son is having rather severe growth issues, and I've had several parents tell me his doctors are over reacting and they just want to run unnecessary tests to make money.

A look at my son's growth chart would show them exactly how big a problem we are dealing with. He isn't "just small." And just like with my preemie, saying "he looks fine" doesn't make anything any better.

Sorry, I'm off on a tangent now. In the end, I totally support more data gathering on long term outcomes. Without hard numbers, we aren't going to be able to make on progress on improving outcomes.

Kyrsten said...

I shouldn't be, but I'm still amazed by the persistence of outdated (mis)information and "old wives' tales" about preemies.

Sometimes what should be a simple discussion turns into a debate about misconceptions...

Starting when he was still in the NICU ("at least he's alive," "when he's 5 pounds he'll come home") and continuing now ("he looks/acts/seems fine," "he'll grow into it/out of it/whatever"), I'm still --nicely, I hope! --but firmly correcting friends and family.

I don't mean to get up on my soapbox (my husband's term for it), but I can't bring myself to say "uh,huh, sure" and move on! (Maybe it's the teacher in me, lol.)

I firmly understand not wanting to use labels or broad terms for my children; on the other hand, I think a lot of the problems come not from the labels we don't have but from misunderstanding of the ones we do.

Kyrsten said...

Sorry, one more thing, please--

I saw the nasty discussion on Liz's blog, too... I think it's all related to something else that's been discussed here, too: waiting for the other shoe to drop.

I consider myself a very positive person (and have had others say that often, too); and yet, the minute I express concern about something in regard to Joshua, I'm accused of "looking for something to be wrong" (my Mom in particular lays this one on me).

I can't win!

A family friend whose surviving twin/preemie daughter is now a teen only recently told me that she was investigated by DYFS when her daughter failed to thrive. She doesn't talk about it, because even family members still think she must've been doing something wrong...

terri w/2 said...

Kyrsten said: "A family friend whose surviving twin/preemie daughter is now a teen only recently told me that she was investigated by DYFS when her daughter failed to thrive."

My good friend was videotaped - VIDEOTAPED! by a physican while she was feeding her infant daughter who was also failure to thrive. Then they told her that she was "too anxious" - that the reason her daughter was failure to thrive was because of her anxiety. Well, hell YES, a mom is going to be anxious while feeding a FTT infant who projectile vomits 4 feet across the room and who is being VIDEOTAPED! UGH! So then the suggestion was that mom should feed her daughter in a quiet room, semi-darkness, blah blah blah - yeah, like that worked.

Next, they said baby needed to be hospitalized and the "staff" would feed her - she gained an ounce in a week - same thing, projectile vomiting, but since she GAINED, the MD felt triumphant - mom was "trained" how to feed baby.

Fast forward to a year later - baby weighs 8 pounds, massive projectile vomiting, second and finally third opinions found huge issues with reflux. A fundoplication was placed, and because of the severity of the reflux, came UNDONE 2 days later. Another surgery followed, new fundo, g-tube. Baby finally gained weight.

Yes, moms are definitely being blamed - not only for the behavioral/psychological/emotional issues of our kids, but even the obvious physical ones as well.

On an aside - I too was amazed at the nastiness at Liz's site. Liz, if you're reading this, you go, girl! Way to talk about the big ol' elephant standing in the middle of our living rooms!

Anne from News Moms Need said...

If you're looking for materna infant health data this is a great resource: http://www.marchofdimes.com/peristats/

Catherine said...

I am amazed at the nastiness on Liz's blog also. It appears that preemie moms are have defined two very different camps. One that focuses on all of the wonderful, positive things about preemies as they mature, and the other with discussion on the problems that arise from prematurity. Though most parents spend time in both camps (as do all parents in terms of negative/positive experiences, there seems to be a particularly severe divide with preemie parents.

Are there parent/child groups for preemie families so that there is more contact? I don't mean just on the internet but playgroups, coffee hours, lunch together regularly as Candlelighters have for cancer families. I have seen annual PICU reunions, and many multiples groups here, but not many for kids who are preemies. THis is a growing group as our medical technology becomes such that more very young babies can survive. It's nice not to be alone in this "preemie experiment" that is happening.

Heck, just thinking about it; there are groups for Down Syndrome kids, for adopted families, all kinds of common bases.

Catherine said...

I am amazed at the nastiness on Liz's blog also. It appears that preemie moms are have defined two very different camps. One that focuses on all of the wonderful, positive things about preemies as they mature, and the other with discussion on the problems that arise from prematurity. Though most parents spend time in both camps (as do all parents in terms of negative/positive experiences, there seems to be a particularly severe divide with preemie parents.

Are there parent/child groups for preemie families so that there is more contact? I don't mean just on the internet but playgroups, coffee hours, lunch together regularly as Candlelighters have for cancer families. I have seen annual PICU reunions, and many multiples groups here, but not many for kids who are preemies. THis is a growing group as our medical technology becomes such that more very young babies can survive. It's nice not to be alone in this "preemie experiment" that is happening.

Heck, just thinking about it; there are groups for Down Syndrome kids, for adopted families, all kinds of common bases.

23wktwinsmommy said...

What happened on Liz's blog was tasteless, cruel, and angered me so much that I literally woke up in the middle of the night after reading it.
I guess it really bothers me that a mother can't share her experiences about HER child without being criticized as being "negative" or "ungrateful." Are you kidding me?
This denial that there are *usually* a huge host of issues we face as preemie parents is outrageous. The idea that one should supress feelings of pain, anxiety, and worry they feel about their child is pretty pathetic.
We can be ETERNALLY grateful for our children, even while WISHING with all of our hearts that life was easier for them, that they didn't struggle or suffer. These feelings can, and do exist.

Statistics are vital because they give evidence that our children often struggle with a wide range of issues...developmental, physical, medical, sensory, etc, and that these things are not the "fault" of a parent. Statistics can help a parent "prepare" for what life could bring, and not catch them off guard, believing all will be "normal" by age 3, because so often that's not the case.

There is no shame in discussing the issues your child faces, it certainly doesn't mean you love them less because you don't sugar coat things; in fact, in my opinion, you are a better parent when you can face the realities and ACT and ADVOCATE.

It would make it easier to advocate for our children if the wide range of effects of extreme prematurity were understood by the public, medical, and school system the way autism is *beginning* to be.

Perhaps people are wary of openly discussing challenges because they don't want to be seen as ungrateful for their child who faced great odds of not surviving, or because they fear it impacts the resuscitation dilemma. I can understand these points. However, it took me awhile to learn that it is an individual's decision how they view their child and the resuscitation dilemma, and differing views are not related to the value of my children. Everyone is going to respond to their situation differently, but if we can't even talk about the challenges our kids face, we can't learn from each other, can't support each other, and can't advocate together for a common cause...the rights our children so deserve.

liz.mccarthy said...

Thanks everyone for your kind words and I have to say terriw/2. OMG, I can't believe what I read in your comments. that just made me feel sick that a mother could be blamed for not feeding their child, that poor poor mom. Oh my heart just drops for her and I hope she has others around her who DO understand what SHE"S been through. (I certainly know, it sounds identical to my life with Kaitlyn, except I fought the doctors to find an answer and no one EVER blamed me

ThePreemie Experiment said...

Having a label... does it help you get more services?

I think it largely depends on how obvious the outward signs are to the observer. If you have a child who is severely affected with CP, well then a label won't change anything. Everyone can see the issue and no one will question what help you need.

But, when you have issues such as mental health, feeding issues, behavior issues, etc, having a label can take the focus off of blaming the adult and put it back on the issue and how to help the ENTIRE family.

ThePreemie Experiment said...

I think, for me personally (although I know I am not alone), what would have been most helpful when Paige was younger was to have more understanding from family, friends, doctors and the general public.

Having to fend off the blame for some of the issues due to prematurity was more than hubby and I could bare at times.

Having to hear from people with no experience raising preemies, that everything will be fine if we would just stop taking her to doctors, was not helpful.

Having to answer questions as to why Paige's behavior was so out of control, and being told that we must be doing something wrong, was not helpful.

My skin is much thicker now but it was hard to handle during that vulnerable state we were in, at the beginning of our journey.

Having the statistics and/or labels makes it easier for parents to explain.