Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months

**After talking with Helen, I have decided to make a separate post out of this study, which Helen cited in the comments of the previous post, as to make sure it doesn't get lost in another topic.**

Helen Harrison writes:

I have just seen a study In "Pediatrics" from the NICHD entitled "Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months" which contains some rather shocking (to me, at least) information, indicating that current outcomes are even worse than I thought.

[Gargas, Vohr, Tyson et al. Pediatrics 2009:112-121.]

This study looked at outcomes (both by gestational age and birthweight) of 5,250 children born weighing less than 1000 grams between 1998 and 2001 in NICHD study hospitals in the US.

"Unimpaired" was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking.

This study offers a new perspective on outcomes since "mild" (and sometimes "moderate")disabilities -- which most of us parents would consider fairly severe -- are lumped in with "normal", "unimpaired" outcomes when neonatologists and other professionals give outcome information to parents.

This is, as many of us have learned the hard way, highly misleading.

So the NICHD researchers set out to record just how many children were actually free of impairment by the criteria above, at age 18 to 22 months.

We parents also know that 18 to 22 months is much too early to determine some pretty devastating outcomes of prematurity -- autism, for example -- so even these numbers may be overly optimistic.

Here's what they found:

Less than 1% of children born weighing less than or equal to 500 grams survived to be normal(that is, "unimpaired" at 18-22 months).

From 501 to 600 grams it is about 5% unimpaired;
701-800 grams about 15 % unimpaired ;
increasing to 24% for infants 901-1000 grams.

By gestational age: <1% at 23 weeks are unimpaired;
< 5% at 24 weeks;
about 15% at 25 weeks, and
about 24% at 27 and 28 weeks.

(I'm reading some of this from a graph so I can't cite exact percentages.)

After 27-28 weeks gestational age, infants born at 1000 grams or less are small for gestational age as well as premature -- an additional risk factor -- and the percentages of unimpaired decline again, so that, for example, less than 20% of children born at 31 weeks weighing 1000 grams are unimpaired.

Impact of Postnatal Steroids...

Impact of Postnatal Corticosteroid Use On Neurodevelopment at 18 to 22 Months' Adjusted Age: Effects of Dose, Timing, and Risk of Bronchopulmonary Dysplasia in Extremely Low Birth Weight Infants


OBJECTIVE. Postnatal steroid use decreases lung inflammation but increases impairment. We hypothesized that increased dose is associated with increased neurodevelopmental impairment, lower postmenstrual age at exposure increases impairment, and risk of bronchopulmonary dysplasia modifies the effect of postnatal corticosteroid.


CONCLUSIONS. Higher steroid dose was associated with increased neurodevelopmental impairment. There is no "safe" window for steroid use in extremely low birth weight infants. Neonates with low bronchopulmonary dysplasia risk should not be exposed. A randomized trial of steroid use in infants at highest risk is warranted.

***I never know what I am allowed to post, legally. So I am only posting the objective and conclusion. If you click on the title it will take you to the abstract. I don't have access (can't afford-lol) to the entire article.

What I find interesting in the Conclusion is the statement, "There is no "safe" window for steroid use in extremely low birth weight infants."

Quality of Life

A study in one of the recent issues of Pediatrics states the criteria used when defining the 'quality of life':

"The arguments that most frequently were used to conclude that quality of life was deemed poor were predicted suffering and predicted inability of verbal and nonverbal communication."

After discussing the topic of 'quality of life' on one of my groups I realized that it is far from cut and dry in the medical world. A few people had shared their ideas and I am hoping they will share them here too.

When parents are faced with making end of life decisions, they base it on quality of life. In order to do this, you have to have some idea of what that means to you.

In order for the doctors to advise parents, they too must have an idea of what their definition is to the quality of life question.

Defining 'quality of life' is not uniform. Try searching "quality of life definition". You will get answers that are across the board.

So, how do we begin to define it? Is the answer a personal one? And, if it is a personal one, then how does a doctor counsel his/her patients/parents while keeping his/her own definition out of the equation? Is that even possible?

Glucose Intolerance and High Blood Pressure in Adult Preemies

Glucose Regulation in Young Adults with Very Low Birth Weight

Petteri Hovi, M.D., Sture Andersson, M.D., Ph.D., Johan G. Eriksson, M.D., Ph.D., Anna-Liisa Järvenpää, M.D., Ph.D., Sonja Strang-Karlsson, M.D., Outi Mäkitie, M.D., Ph.D., and Eero Kajantie, M.D., Ph.D.

ABSTRACT

Background: The association between small size at birth and impaired glucose regulation later in life is well established in persons born at term. Preterm birth with very low birth weight (<1500>Methods: We performed a standard 75-g oral glucose-tolerance test, measuring insulin and glucose concentrations at baseline and at 120 minutes in 163 young adults (age range, 18 to 27 years) with very low birth weight and in 169 subjects who had been born at term and were not small for gestational age. The two groups were similar with regard to age, sex, and birth hospital. We measured blood pressure and serum lipid levels, and in 150 very-low-birth-weight subjects and 136 subjects born at term, we also measured body composition by means of dual-energy x-ray absorptiometry.

Results: As compared with the subjects born at term, the very-low-birth-weight subjects had a 6.7% increase in the 2-hour glucose concentration (95% confidence interval [CI], 0.8 to 12.9), a 16.7% increase in the fasting insulin concentration (95% CI, 4.6 to 30.2), a 40.0% increase in the 2-hour insulin concentration (95% CI, 17.5 to 66.8), an 18.9% increase in the insulin-resistance index determined by homeostatic model assessment (95% CI, 5.7 to 33.7), and an increase of 4.8 mm Hg in systolic blood pressure (95% CI, 2.1 to 7.4). Adjustment for the lower lean body mass in the very-low-birth-weight subjects did not attenuate these relationships.

Conclusions: Young adults with a very low birth weight have higher indexes of insulin resistance and glucose intolerance and higher blood pressure than those born at term.

The full article can be found here.

Sensory Issues and Preemies

The "sensory issues" label is known by a few names...

Sensory Integration Dysfunction
https://mmm1106.verio-web.com/sensor/faq.html

Sensory Processing Disorder
http://www.sensory-processing-disorder.com/index.html

There is a comprehensive symptom checklist here.

There is some controversy over whether or not this "disorder" is real. I can tell you first hand, beyond a shadow of doubt, it most definitely exists and can be debilitating for both the preemie and his/her family.

When Paige was a baby she cried almost every waking moment. We asked docs and they would just tell us that she had an underdeveloped nervous system. It was so bad at times that, as soon as hubby came home from work, I left the house. We felt incredibly bad for her. Nothing helped. She hated being swaddled. She hated being hugged and would freak out with any sudden noise. You may as well forget about cutting her nails.

As she got a little older the crying lessened but did not go away. Her OT taught us how to do The Wilbarger Brushing Protocol. http://www.pbbkids.com/the_wilbarger_brushing_protocol.htm
I was skeptical (I don't tend to buy into therapy that is "outside of the box") but was willing to try anything. It helped a lot but I could still see that she was very different than other babies I had been around.

We continued to ask docs about her behavior but were always told non-helpful statements like, "Oh she's a fighter. That's why she is alive."

During her toddler years it became very apparent that she had major issues. We could not hug her unless she hugged us first. We could not touch her unless we warned her first. She would smear food all over her body. She jumped constantly. She could not sit in a chair and eat, she had to hop while eating. Cutting her nails was a nightmare for all involved. If she was playing outside and there was mud anywhere within her sight, she would smear it all over herself before she could play. Noises... I literally still get tears in my eyes when I think of the pain (yes... pain) she experiences when exposed to noise. One day her and I were shopping. I was pushing her in the cart and I was singing to her (she was about 3-still was very delayed in speech) when a very long announcement was made over the store's loudspeaker. She immediately covered her ears, started crying and said, "mama help me". I took her out of the cart, covered her ears and we sat on the floor crying together.

At every single doc visit (pediatricians, specialists, therapy, etc) we mentioned our concerns. Not one person mentioned sensory integration dysfunction. I felt helpless. No matter what research I did on my own, I could not find one bit of info that applied to Paige.

It all changed one day when my Dad and I took her to the mall. She was about 3 1/2 years old. She was jumping along side of us when her hop turned into a sprint. My Dad reached out and grabbed her shoulder. No big deal right? One problem. He forgot to warn her that he was going to touch her. She immediately dropped to the ground and started scratching her face into a bloody mess.

That was it. No one was going to dismiss my concerns anymore. I spent hours on line, every day, trying to find a name for this monster that was had a grip on my daughter. I joined a parent based support group where most people used to put their child's alphabet soup of diagnosis in their signature line. I noticed the letters "SID" in one post. Knowing the child had not died of sudden infant death syndrome, it intrigued me to search with those letters. Up popped a few sites about sensory integration dysfunction. I cried while reading the symptoms. My daughter had most of them.

I found a local OT who specialized in SID and begged for a quick appointment. After our initial consult she said that Paige's case was the worst she had ever seen. I sure wasn't surprised. She put her in a swing, like the ones used with Autistic kids and Paige smiled the biggest smile I had ever seen. After the swing she put Paige in a weighted vest (only 1 pound weight). Paige actually SAT in a chair through the rest of the first therapy session.

Below is a list of her symptoms at the time of the start of therapy (she was 3 1/2 years old)...

sensitive to loud noises
hears well but does not listen well
shouts or screams for no apparent reason
sometimes acts as if in her own little world
very noisy child
likes to press ears against TV, speakers
likes to listen to loud music when she is in control of the volume
cups hands over ears with sudden noise
hates haircuts, hair washing, hair brushing, cutting nails
bangs hands on tables and walls to create noise
cannot sit still
high tolerance for pain
always removes her clothes
stuffs too much food in mouth
dislikes being touched
delayed in toilet training
heavy walker, stomps her feet
rejects being held unless it was her idea
loves VERY strong smells
flaps hands around eyes
rolls head from side to side
loves playing in water (abnormal attraction to it)
enjoys things that spin or turn
loves to be spun around
everything must be in order (shoes all in a row, etc)
loves to open and close doors and drawers
loves mirrors
can't sleep unless blanket is very tight
smears food or non edible liquid items on arms and legs
trouble going up and down stairs
turns upside down many times during the day


We continued in therapy for a few years. I can honestly say that I do not think there is a cure. I've heard some people tell stories that they were cured after a few sessions. I don't believe this is possible if the child has true SID. But, what therapy did give us was a resource of ideas to help Paige be able to function in the world. That's the key. I've had friends and relatives read over the symptoms and say things like "oh, I have some of those symptoms and I don't need therapy." I feel that the determining factor for us was that SID completely interfered with Paige's ability to function in society. Completely.

She is 8 now and still has major sensory issues. As a matter of fact, she still has all of the issues that were listed above. But, she can now function around them. Most of the time.

There is more information out there on SID now, than there was when Paige was little. I am so thankful for this. For years, educating parents and docs about SID was a passion of mine. I passed out information sheets to every doctor that we visited. A few times I had docs say, "I just had a parent asking me about this." or "I just had a parent who was concerned about her child because of some of these symptoms."

If you are reading this, as a parent of a preemie, there is hope. If you can find a SID certified OT, that would be a great resource for you. There are some wonderful books that have been written about this disorder. I have only read the books by Carol Kranowitz but have heard parents speak of other authors who have written on the subject and they felt their books were helpful. Please feel free to ask questions here if you would like some ideas of what has worked for us. If you don't feel comfortable doing so, please feel free to email me privately.

If you are reading this and you are a physician, please know that there are an incredible number of preemies that are affected with this monster. Inform the parents that they are not imagining it all. Let them know there are others like them. Inform new parents of preemies on what to look for in the future. The earlier the intervention, the better.

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