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.

More on Mental Health

Some of you may have heard about/read a recent news story about Terri Stimmel, a woman convicted of killing her roommates cat.

You may read the story and be shocked by her actions.

I, on the other hand, read that story and was immediately saddened by the fact that she had not had proper mental health help. The story quotes her as saying that she had "uncontrollable impulses". Could it have been OCD? Another issue? Could it have been prevented by medicine and counceling? (Both of which she is currently receiving.)

Fortunately she is finally getting the help that she deserves.

Unfortunately animals died, the owner of the cat is suffering and Terri's life will never be the same. She is painted as a monster but no one is addressing the real issue...

Our health care system is failing our most vulnerable people... those with mental health issues.

There is one fact (among others) that was left out of all of the news stories about Terri.... she was born premature. Yep, yet another former preemie with mental health issues.

I have been very open on this blog about Paige's struggle with anxiety and OCD. She has hurt herself, hurt her brother and had thoughts of hurting her father and I. She makes innapropriate statements in front of others. She has thoughts that are too scary for me to mention here. All because of her OCD "thoughts". There are times when I want to crawl in a hole, bury my head in the sand, deep below reality and never talk about it again.

Then I get letters from other adult preemies who thank me for being honest. They need to know they are not alone. The letters from parents of kids, who are the same age as Paige, hit me hard too (although I wholeheartedly appreciate each and every one of them).

The kids are hurting. Families are hurting.

Who will take care of our kids when they are adults and out on their own? When we die? What happens if they can't afford mental health care? What happens when they can't work because of mental health issues?

Our kids WILL grow up. There is an entire group of kiddos who were saved at the edge of viability who are now having issues like Paige.

Will the system be there for them?

It sure isn't there now. It wasn't there for Terri.

Mental Health Grades by State

The National Alliance on Mental Illness (NAMI) has released a report on the state of the mental health system in the United States. They used specific criteria to produce grades for each state.

How does your state rate??

http://www.nami.org/gtstemplate.cfm?section=grading_the_states&lstid=701

Unfortunately I live in a state that received an "F". It was no surprise to me. Thankfully we have an excellent team in place for Paige, but this was no easy task. There is a shortage of docs and basically no programs in place to help the kids if they are not hospitalized. There is not even something as simple as a social skills playgroup for kids.

I wonder what it's going to take to raise awareness and find solutions.

Why is it so uncomfortable for people to discuss mental health issues?

Searching

Below is a list, according to my site meter, of how people happened upon my blog based on their search criteria.

* preemies and brain bleeds and statistics
* adult micropreemies
* preemie metabolic syndrome
* preemies and oral aversions
* behavior problems and preemies as they get older
* preemie hearing sensitivity
* micropreemie ostomy bag
* chance of having preterm birth again after having full-term pregnancy in between
* TPN to tube feeding in micropreemies
* preemie long term effects 28 weeks
* problems in school age preemie


The list speaks volumes.

Mommy, I need a wheelchair

Being honest here... I don't know what to do when Paige utters this statement.

Paige has very mild CP. You would not know it by watching her on the playground. She runs and swings and can maneuver the monkey bars like a pro. When she is with her peers, the CP is a little more noticeable. Nonetheless, most people still cannot tell.

Does that mean that she does not have pain?

Paige started telling docs that her legs were hurting as soon as she could form sentences. The first neurologist patted her on the head and told her that her legs really don't hurt. He said that she could climb up on the exam table so she must be fine. She was so sad. (yes, we fired that neuro) Other neuro's admitted that her legs were very tight but she must not be in any pain because she was so active.

Yet another case of "she looks good to me."

When we moved we started seeing a new neurologist (for her epilepsy). During the very first visit, and during the first 5 minutes of the appointment, she told him that her legs hurt. He listened. He told us it was because she has CP. That was the first time she was diagnosed. Age 6. This neuro put her on pain meds, which Paige took until they didn't seem to work anymore. We let her decide and she chose to try to handle the pain and stop the meds, mainly due to the side effects and the fact that they didn't work.

She has never been able to walk long distances. She only has short bursts of energy. She has been asking for a wheelchair for about a year. Her neuro has even offered to let her out of certain activities (mainly long distance running) in physical education class. I have never agreed to any of it.

I'm afraid she will give up.

Recently we were headed to the mall. We knew we were going to be there for a few hours. Paige was very upset and begged for a wheelchair. When we go grocery shopping she sits in the big part of the cart. But there are no carts at the mall. I told her that we would take breaks. She was so sad. "But Mommy, I NEED a wheelchair!" I think she is in a growth spurt because her legs are even tighter than they have been before. She has pain daily.

Hubby and I gave in.

Hubby pushed her while I pushed her brother in the stroller.

I held back tears.

Paige was the happiest I had seen her in the longest time. Every so often she would get down and run around. When her legs got tired, she got back in the wheelchair.

All was good. Then we ran into one of the secretaries from her school. The look on her face said it all. "What the heck is she doing in a wheelchair. She looks fine to me."

At the end of our trip, she thanked us for the wheelchair and asked us if she could get one of her own. She wants purple.

I'm not sure why I'm having a hard time with this. Maybe because I know what people will be thinking (about hubby and I-not what they will think of the wheelchair). Maybe because I am so afraid she will give up. Maybe because I am still hoping that all of the lasting effects of prematurity will just go away.

I don't even understand how she can have so much pain. I've watched her run around the playground... she looks good to me too.

Post Traumatic Stress Disorder In Preemies

While reading a post about childhood PTSD over at corpus callosum, it brought me back to our discussion on PTSD here on this blog, and how parents of preemies endure so much continuous stress from their NICU experience and subsequent thrust into parenting a preemie.

I wrote to the blog author and asked his thoughts on whether or not preemies themselves could be suffering from PTSD and what could be the cause of the mental health issues they face in infancy and as they get older.

He was gracious enough to write a post on the subject.

http://scienceblogs.com/corpuscallosum/2007/05/do_vlbw_preemies_get_ptsd.php#more

As I speak to various docs and read studies on the long term effects of prematurity and learn what is being done to improve the outcomes, I hardly hear anyone discussing mental health issues. Thank you to Corpus Callosum for addressing my question.

Out of all of the long term effects of prematurity that Paige currently deals with, mental health is the hardest to treat. It is takes its toll on her and all of us in the house. She suffers horribly at times. And, because we have to deal with the "she looks good to me" mentality, it's hard to find help. She is not alone. I talk to many parents who are at the end of their rope because of the behavior of their preemie. Adult preemies suffer as well.

How can we help future preemies if no one will acknowledge the mental health issues that plague our kiddos?

At age 2...

Since so much emphasis is put on clinic follow up studies that only track preemies through age 2, I thought it would be interesting to post about my daughter at age 2. The following was written on her clinic discharge sheet.

"Premature girl born at 25.5 weeks gestation, 805 grams, 13" long. Current age is 24.1 months. There is no sign of any gross motor delay and only a slight fine motor delay. Although speech is limited, child uses sign language to communicate and therefore was able to demonstrate adequate language skills. Parents report that child is hardly sick with any colds. Parents also report child has chronic constipation. Information was given and parents were instructed to increase water and fruit."

No further therapy recommended. No further follow up is needed."

Ah, what a nice age that was. It's true, she was hardly sick. Many doctors commented on how healthy she appeared to be. She could not put 2 words together either by speaking or signing. I still wonder how they felt she had adequate language skills. The constipation comment still kills me to this day. I found it quite interesting that the constipation issue started in the NICU (where she was fed breatmilk and formula) but the clinic felt that it was our fault and instructed us to give more water and fruit!

Age 3...
diagnosed with severe sensory integration dysfunction,
still could not put 2 words together
diagnosed with severe anxiety disorder
diagnosed with PDD-Nos
self harming behavior
could barely bend legs because of CP
had bilateral hernia repair
started on MiraLAX for constipation

Age 4...
1 week before turning 4 she had her first seizure
could now speak on an 8 year old level
lost ability to walk long distances because of fatigue
sensory issues worsened
began meds for anxiety disorder but it only caused rages-she tried to pull out her eyeball
had many procedures to asses reflux
diagnosed with failure to thrive due to weight
diagnosed with GERD
chronic sinus infections

Age 5...
could not function in kindergarten due to fine motor delay
sensory issues worsened

Age 6...
finally got a diagnosis of CP
had tonsils and adenoids removed to open airway
outsiders began noticing her social differences

Age 7...
had so many GI procedures that I lost count
multiple MRI's to determine other possible causes of leg pain
tried to kill herself
self harming behavior
yellow adult teeth

Age 8...
diagnosed with OCD
started on meds again for anxiety disorder
socially is an outcast
will be getting palatal expander

I'm sure I have forgotten some.

Age 2 was looking pretty good!

I would love to hear from other preemie parents as to what issues were present at age 2 and which ones did not show up until later.

Invisible issues related to prematurity....

Wheelchairs, glasses, feeding tubes, leg braces... all are outward signs of prematurity . If you need services at school, you'll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity... Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
headaches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, "these issues are not that bad" then you have never lived with a very young child who stabbed herself because her "thoughts" told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what make me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually common to preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I've been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

The Outcomes....

Helen Harrison has compiled a list of "preemie syndrome symptoms". She entered this in the comments section of one of my posts but I feel that this list is important and wanted to devote a post to this list of issues that preemies face.

Let me make something very clear. Helen is just reporting on what other preemie parents have listed as "issues". These issues ARE real. Over the years I have been in contact with hundreds (not just 15-some of you will understand this humor) of preemies who have these "issues".

Those of you who are new parents are were told of these potential issues... you are lucky and should be thanking those that have come before you and fought to be heard. When our daughter was very young, we had many pediatricians and specialists tell hubby and I that our daughter was the only one who was experiencing some issues. Then I started talking to other preemie parents. Imagine the joy/horror we felt to know we were not alone. We started speaking up, fighting to be heard, so other parents would not ever experience what we went through.

The list is not complete. If you have more issues you are wondering about.. please feel free to ask.


Helen Harrison said...

Here are the preemie syndrome symptoms I used in a 2005 presentation to the National Perinatal Association.These are the traits that don't show up in premature follow-up studies, but alone or in combination, and they usually exist in combination, these traits may prevent future independent living.

Social Dysfunction: few, or no friends; oblivious to social cues; oblivious to social space; low self-esteem

Behavioral Problems: general immaturities; poor impulse control; stereotypic or self-injurious behaviors; intense need for order and routine; sleep disorders

Extreme Sensitivities: strong startle reactions; hypersensitivity to sound; extreme aversions to certain tastes and textures; "tactile defensiveness"

Cognitive Problems: difficulty thinking logically or to dealing with abstraction; literal-mindedness; May be good at rote learning; test scores may be higher than actual functioning;

Also "savant" traits that co-exist with low IQ; inability to comprehend or follow simple directions; generally disorganized

Abnormal Reactions to Pain and Danger: may not respond to pain of illness or injury, but may also still have a deep fear of medical procedures; may fail to recognize (or actually seek out) life-threatening experiences; peculiar phobias

I only included behavioral/cognitive issues above. Many will recognize them as compatible with autism disorders. Elsewhere I have also mentioned the physical and medical problems that continue to afflict our children:

significant motor problems not diagnosed as cerebral palsy

intractable feeding disorders; failure to thrive

digestive problems, such as severe reflux, intractable constipation, bowel adhesions from NICU surgery,gall bladder disease, need for g-tube feeding arising in late infancy or beyond

kidney stones

bedwetting

osteopenia (rickets)

precocious puberty

ongoing lung problems; severe asthma

visual problems from ROP that deteriorate leading to later blindness

metabolic syndrome (high blood pressure, diabetes, high BMI)unusually copious sweating (metabolic? neurologic?)

cortical blindness

OCD

Depression; bipolar

Delusional thinking; schizophrenia

Perseveration Seizure disorders arising in adolescence or early adulthood

dental issues (yellow adult teeth, high pallate, missing teeth)

vocal cord paralysis