Wednesday, January 17, 2007

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

19 comments:

Long Time Listener said...

Thank you for putting this " out there". As you say, Helen Harrison is simply compiling what is already available so thank you Helen.
Those who are new to the world of prematurity may find this hard to read and this is understandable and may well seek to deny this picture. That is fine. We all need to find our own way with these children. This is not an easy path.
Good luck to the sterling parents and neos that truly can KNOW these children

terri w/2 said...

It is an interesting list and one I know well. When there are several "mild" disabilities, the overall picture is no longer mild. .I have a daughter on both ends - one who is very, very severely multiply disabled and her once-thought-to-be-normal twin. I will discuss *her* development, as it is quite fascinating in a sad way. .

J. came home from the NICU after within 3 months (a 25ish weeker) with no significant issues other than respiratory support for a short time. No meds, no monitor, eating well upon discharge. We were so thrilled to see her doing so well.. .and then. .

By one year she was talking in sentences - my she is GIFTED, we thought. But at one year not adjusted age, she was not yet sitting. By two years, she was not yet walking. We started asking what is going on - one physician, a second physician, a third physician - finally came the diagnosis of mild-moderate cerebral palsy. We came completely unglued, not one but TWO children with disabilities.

She started school - highly verbal, extremely good memory - terribly disorganized, could not make friends - preferred parallel play to interactive play. Could not maintain eye contact, was horrible in math no matter how much we tried to help and work with her - it simply did not make sense to her. It seemed SO odd, how could such a precocious child with extreme verbal skills and memory NOT get simple math?

Elementary years - extreme difficulty with peer relationships. Extreme difficulty with anything associated with math and problem-solving in general. Would do homework but forget to hand it in - grades plummeted even though she tested in the 90th percentile (except of course in math). Teachers called her disorganized, lazy, manipulative. I saw something unrecognizable but beyond her control.

At 14 she was hospitalized for a suicide threat. Several days following hospital discharge in an effort to get out of HS algebra, she overdosed. I sat next to her on the floor in the bathroom, sobbing but making her throw up, as I knew she would be dead if we waited for an ambulance.

At 15, a book fell into my hands called "Bridging the Gap" parenting a child with a non-verbal learning disorder. I read the book cover and broke out in a sweat. This discribed my child perfectly, completely! I called for an IEP - the teachers, including the LD teacher had NEVER heard of NLD, and for sure did not think Jessica had any type of learning disorder - again, manipulative, lazy, disorganized were words used to describer her academically.

I went to the top pediatric neuropsychologist in our state for a thorough evaluation - a full day of testing for her and half day of history taking from me about her. The diagnosis - high functioning autism (Aspergers) as well as Non-verbal Learning Disorder.

3 significant serious disabilities - yet, if she were evaluated under neonatal guidelines, I doubt if she would be considered severely disabled - she walks, she talks, she drives, she attends college part-time, but I doubt if she will ever live independently.

Thank you Helen for compiling this list. It describes my daughter completely.

Lori said...

I have learned so much from reading the information being presented by Helen Harrison and others, as well as stories like the one on this blog and terri w/2 shared. I have removed myself from the discussion for the most part because I have little to offer. Sadly, our twins had the "outcome" least interesting to those interested in the issues surrounding the survival and care of preemies... they died. They not only died, but they died without spending a single minute in the NICU so to those outside our experience, there is nothing to "learn" from their brief lives.

However, I am becoming increasingly convinced that the bigger picture of prematurity simply must start being shown to the general public. While the outcomes presented here may not be the *whole* picture, they are certainly a big part of it. Prematurity is very likely the #1 obstetric and neonatal problem of our time, and yet most people I know don't think it is much of a problem at all. Perhaps if more people understood how often the trauma of prematurity extends far beyond time spent in the NICU, they might take a bit more notice. Maybe then they might start to realize that finding effective, safe ways to *prevent* prematurity is not just a "good idea", but a matter of life and death.

When I was in labor with twins at 23 weeks, my OB painted a very grim picture as to our babies chances of survival. He then painted an even more dismal picture if they actually were to survive. His viewpoint certainly affected ours and since that time I have often questioned what things we might have done differently if we had been given an even slightly more optimistic view. However, more and more, I am starting to appreciate that he was simply trying paint us a *realistic* picture. He was compassionate, he was gentle, he openly expressed his sadness for us...and he was also honest. I guess I can't fault him for that.

preemiemum said...
This comment has been removed by the author.
preemiemum said...

As the mum of a 24 weeker with an Autism dx I know I am probably one of the few who has a name attached to this "preemie syndrome" But that list describes my son, is the name/label he has correct? I guess it's the one we have until this syndrome is recognised

The feeding issues part of this list interests me, having a child who is tube fed and has recently been diagnosed with a brain stem injury - make me wonder just when that brain stem injury happened, and is this another area of neo-natology that is currently being hidden, because the long term feeding issues are barely discussed out there by the professionals and yet it's a frequent discussion amongst parents.

Helen Harrison said...

To Lori:

It sounds as if your OB was a wise and compassionate human being, trying to do his best for your family in a tragic no-win situation. In doing so, he took tremendous personal risks.

My own OB (like so many others I've talked to) has left the profession. He couldn't bear handing over preemies to neonatologists knowing the outcomes these babies and their families would all-too-often experience.

But then he delivered micropreemie twins (after DNR decisions had been made all around) and a nurse, against orders, took the babies to the NICU. The children survived with handicaps and the parents sued the OB.

I hope that you can find some peace of mind and understanding for your decisions here on this blog. Many of us have "been there" too.

The Preemie Experiment said...

Preemiemum...

Oh the feeding issues. It sure is talked about a lot amoung parents isn't it? But docs deny it. We were told that our daughter was not eating because we were stressed. It's easy to blame parents before looking for other causes! When it was finally taken seriously (after changing docs 3 times), it was discovered that she had a floppy airway and mild CP. It was hard for her to swallow and she was fearful of choking. I wish I could say it got better with age. Unfortunately she is 8 years old and only 45 pounds. She still chokes and thanks to other GI issues, she hardly eats.

Helen Harrison said...

A friend of mine was sent to "therapy" because she kept bringing her preemie to the pediatrician for feeding aversion and screaming with and after meals.

Turns out this unfortunate baby had gall stones -- a not uncommon complication of TPN feeding(hyperalimentation) in the NICU.

Not only does TPN damage the liver, it damages the brain. Aluminum, a toxic contaminant of commercial intravenous feeding solutions, knocks off approximately one IQ point per day.

[Bishop et al. Aluminum Toxicity in Preterm Infants Receiving Intravenous-Feeding Solutions. _The New England Journal of Medicine_1997;336:1557-61]

And then the mothers are blamed for both the resulting liver and brain problems!

terri w/2 said...

My best friend (a member of the preemie wars) also had a daughter, a former 26 weeker, grade IV IVH with severe, well, severe everything, but the feeding issues were the most difficult of all. She too, was poo pooed about her daughter - sent to a "specialist" - who brought on board a psychologist. . .for mom.

The "team" told mom to leave the baby at the hospital, and go home. They were certain it was mom causing the feeding problems, however, they soon found out otherwise, when the baby projectile vomited nearly everything that went in to her. However, the treatment beforehand of this mom was so horrific! She was actually videotaped prior to her daughter's hospitalization while feeding her daughter, and the insinuation was, she was the cause of all the feeding issues because she was "too nervous" "highstrung" - well - what a shockeroonie - what parent WOULDN'T be after months of this??

Anyway, just had to share that.

Her daughter was released from preemiehood at age 12 following a series of shunt infections. . .mom often tells me she is not haunted by her daughter's death, but her daughter's LIFE filled with constant pain caused by neonatology.

The Preemie Experiment said...

I can't even begin to count how many times so called "professionals" thought that the issues we were reporting were either made up or I was causing them.

One that comes to mind (although not the worst of our experiences) was a school psychologist. After Paige was diagnosed with Epilepsy hubby and I went to her school (special ed preschool in the public school system) to sit down with her teachers and let them know what to do in case she had a seizure at school. When I told the "team" about her epilepsy, the psychologist replied, "Did the doctor say she has epilepsy or are *you* saying she has it?" I almost fell off of my chair. How could she accuse me of making it all up?!?! I slapped the EEG results on the table in front of her and told her how the neurologist said that he doesn't even understand how our daughter is walking and talking. Her EEG showed "almost continuous epileptic form discharges for the entire 24 hour period."

It was clear to me then that she, and the rest of the team, thought that I was lying about our daughters issues.

When she started seeing a psychatrist (for anxiety meds) the school psychologist phoned the psychiatrist and told her that she was concerned that I was fabricating symptoms in order to medicate our daughter!! When the psychiatrist asked how she came to that conclusion the school psych said that our daughter did not show any outbursts or signs of anxiety at school. (keep in mind that school was only 2 hours and only 4 days a week) The psychiatrist told her that it was common in children to hold it together at school and then fall apart at home where they are comfortable. She gave her an example by saying, "if you have a bad day at work you don't kick and scream. Instead, you wait until you get home and let off steam there." The school psych said that she strongly disagreed with the psychiatrist and that she felt that our daughter did not have any of the problems that she diagnosed her with! The psychiatrist told hubby and I that she thought the school psych was really going to cause problems for us. She told us to document every single blood test, MRI, etc and have it ready for Child Services.

As if we needed that crap!!!!!!!!!

Anonymous said...

Hi. My 8 year old son was born at 28 weeks. He had a really good course for a preemie and we have considered ourselves so fortunately, despite all the hells we went through.
This description of preemie syndrome is so helpful for me, though it brings me to tears because it brings me face to face with all the frustrations and anxieties (and sometimes irrational feelings of failure) I have experienced as a mom. Our son has a healthy physique, relatively good lungs, and high intelligence (recently identified as gifted). He performs very well academically, though he's a mess at school. He's been diagnosed with Sensory integration dysfunction (that was a huge boon to us: it made sense of so many things that we couldn't piece together and understand on our own), poor bilateral coordination (he is also very unaware of himself in space and falls and bumps into things and people a lot), and disruptive behavior disorder not otherwise specified. He is sweet and creative and passionately loving. He is also aggressive and has problems with impulse control and regulating his emotions. He is currently being evaluated for depression and for early puberty. He has recently had thoughts about ending his life. He receives cognitive behavioral therapy and occupational therapy.
His school has been patient and sympathetic, sometimes quite helpful. But there is no magic wand, no one solution, and it's so hard to explain to his teachers the multipronged approach that is most effective for helping him learn to regulate himself in the school environment. He makes friends most easily with other "complicated" kids. The kids with typical development tend to find him too much to handle. It feels scary and lonely for us sometimes, and for him too. I think it would be a great benefit if teachers and administrators in K-12 schools could be informed about the complexities of "preemie syndrome," trained to respond with sympathy and compassion, and educated about tools for helping students overcome the obstacles they face and cope with the attendant stress they experience.
The experience has almost felt to me like I am facing a shape-shifting opponent: just when I think I understand the issues we face, and have tools to address them, a new issue pops up that I never expected. I remember purchasing a wonderful book on preemies (It was called Preemies: The Eseential Guide for parents of premature babies) when my son was born that the neonatologist recommended to us. But the book didn't cover these years and it didn't cover these issues. It would be wonderful if a new resource (I'm not a web person, so I'm really thinking of a book; if there is one I haven't seen, please post about it!) could be developed for parents of preemies that would address in detail these more subtle and perhaps less well understood effects of prematurity that do not appear until children are school-aged. Such a resource would go a long way in helping parents recognize and understand what's going on with their children and get them the kind of help they really need. It could provide tools and further resources for dealing with specific issues, and tips for how to advocate for children in school systems and with health care professionals. It would also go a long way in alleviating some of the feelings of loneliness and despair that I think many parents face when they are hit with one unexpected complication after another. That's my wish--if someone who reads this is in a position to create such a resource, I pray that you will.

Anonymous said...

I really appreciate this blog & comment board. I had a 25 week girl, 1 pound 5 ounces. She is now 6 years old and currently is doing fantastic. She does have some of the preemie issues and has been through a lot. She has a strong gag reflex, still wets the bed every night, but we just use pull ups, she will also be getting glasses soon. However minor these things seem to be compared to other kids that were born at her same gestation, it is hard to find info on any of this and how to help her (besides the glasses issue). Reading other posts about kids that are older than my daughter has shed some light on the issues in the future that we may face w/our daughter. I feel like some of these posts have opened my eyes. I at least feel like I am aware and have a heads up now on the things that she may go through. I can't believe I haven't heard of any of this before now.

However, as of right now, her progress has been really great. She started walking at about 20 months. She was physically behind until she was about 3, however, she is by far the tiniest one in her class, the slowest runner, the weakest, etc. Not sure if this is all due to her prematurity or if genetics is playing a part or both. From the time she was brought home from the hospital she had stridor. Our pediatrician kept reassuring me that she would eventually out grow it. However, it was getting worse and the stridor was louder as she grew. I finally took her to an ENT specialist, after I knew she wasn't just going to outgrow it. He diagnosed her with subglottic stenosis. She ended up getting surgery to repair the narrowing of her airway/scar tissue (from being intubated for so long), which included splitting open her trachea and then grafting cartilage from her ribs onto her trachea to open up her airway. She had complications after the surgery from becoming addicted to morphine. She metabolizes medication very quickly due to being born so early. She has had minor follow up surgeries since then, just to scope her airway and to see if it's growing now. I always have to tell the anesthesiologist that she metabolizes medication quickly - she has woken up during surgery before. She came home from the hospital on methadone after her major surgery. So far, that has been the biggest bump in the road. If you would like to read in detail about her story, and the day to day details of her hospital stay when she was born and her surgery at 3, you can find it at: www.strongfam.com and click on Bailey.

I wish there was more information about all of the different issues that these preemies go through.
Again, I appreciate the info I have found on here so far and will be back regularly. Stacey S.

Amanda said...

I am so glad to have found this blog. My daughter was born at 26 weeks 6 years ago and spent 78 days in the NICU. Very bad case of RDS and PIE and spent 36 days on high frequency vent. She was also on TPN's for 7 weeks. Sarah has been diagnosed with a mild case of CP, Sensory Integration and Bronchopulmonary Dysplasia. This girl is very trying at times for us. She cries and whines all of the time, trouble concentrating, can do something one day and then the next or sometimes just 10 minutes later can't do it. Goes off the wall in medical situations, cried harder and was more scared for her brother who had a splinter in his foot. She doesn't listen and everything has to be repeated to her in at least a 5 time repetation. Scared to death of so many things that can't be justified, clingy, no safety awareness at all and knows no danger in people, obsessive qualities such as wanting to collect magazines, coupons, pop cans and is obsessed with food etc. Problems with not wanting to wipe herself after having a bowel movement and will literally sit on the toilet for an hour. I could go on and on and on. We are getting her into a ped who is specialized in dealing with past and present NICU patients. She is so beyond needing an evaluation. She also receives PT and OT.

Fishlet said...

This has been such an eye opener reading all the posts and the blog. I am the mother of a 29 weeks and 6 days girl. She did amazingly well at birth and was only aided breathing for an hour or so, I had been given steriods because my water had gone 3 weeks before....reading this I am so glad she stayed inside that bit longer. Anyways, she had the usual blood transfusion and was on oxygen for a week or so and was discharged after 7 weeks so we have always been really happy with her and no real probs except acid reflux which went at about a year and very sensitive skin, she still has aczeme. She is 2 tomorrow and one of the things i am noticing is her lack of pain but not in all instances if that makes sense....for instance she has a new huge lump on her head this afternoon, but never heard her cry at all !...this happens a lot. She went to grandparents for our first night out without her and banged her eye on the door, cried a little and then carried on having a bath, playing and book before falling asleep, when she woke up she couldn't open her eye properly and it was completely black...as you can imagine the Grandparents were really upset...but i knew when they said 'but she didn't make a fuss' that she is like that. Sometimes she seems to cry more out of the shock then out of pain and in some instances recently i have seen her fall over and hit herself and then look at me give a little wimper for affect then carry on. She also seems very intelligent in some ways but can't remember things which I have just taught her....I don't know maybe that is how she is supposed to be, she is my first so don't know. But as to food I am still breastfeeding her at night as along with a lot of other premie Mum's I know if you couldn't got to term you were going to darn well make sure you could breastfeed, she is a good eater no probs at all. I am going to read this blog and keep up with it as she reaches 2 and see what happens...especially as I am thinking about another baby. Anways thanks for listening to my jabber !

april spiva earliest pr in 1972 said...

my name is april. i was born in 1972 almost three months early. actually they called me a miracle baby as at that time babies born that early never made it and it was a major deal at the time.I weighed one lb and a couple ozs, at birth. I stayed in the hospital for three months after i was born. I had many issues as i grew, developmental delay, i was slow to talk, walk, and potty train. couldnt follow basic instructions,and had lots of trouble in school and with peers. I have been diagnosed with severe learning disorder,and also fibro myalgia. I make a living as an artist in new orleans. I test high and function low, but if you are a parent of a preemie child, understand that it will be hard for you and your family, but im a living testament to what the faith of a loving family can accomplish and overcome. alovelylauren@aol.com

Anonymous said...

I am a mom to a 24weeker tht has been thru jus about every thing a nicu baby.can go thru and after 7mnths of the nicu and many many medical interventions and multiply surgeries I was able to bring him home on many medical machines but no permant disorders so I thought once we got out the nicu and thru.the yrs done with all the specialist he is now about to be 4yrs old and the story painted by all his docs after the two yr mark was great but no one told the story of the longterm effects tht are preemies face until now I thought I was over reacting and jus a Lil stressed thn I read this and the comments and knw tht I am not alone the docs pass off his inablity to still form a sentce or clearly say more thn oneword as typical he still cnt control his emotions even.as a 4yr old can he spits removes colthes and destroys things whn hving a melt down over sumthing as small as hving to sit in a carseat whn going for a drive cnt follow simple directions as well as his full term 1yr brother and is very aggressive now showin.signs of early purberty but not the mental or emotinal maturity and Alot of other things on this list tht the docs jus dnt seem to tke me serious whn I bring thm up in his well baby vist and he also does well in his special edu preschool but as one mom said tht is only 3hrs a few days out the week and even.in his regluar Daycare holds up well but as soon as I get him in the car to go home it is all down hill and melt downs until bed time and the fact tht ge is non verbal only makes it worse he also still is in physical therpy for immature pyshical devlopment and I have had him in early intervention since he was home from the nicu and he still is devloping at the pace of fine motor gross motor mentaly and emotionaly of a 18mnth old as I said earlier he will soon be 4 but this is not sumthing I was prepared for I thought the Storm was over and things would be normal by now and here it is only the beginning to a new chapter of chaos as we head into.the school yrs and sumthing tht should be talked about with new preemie parents to help thm.prepare thm selves and families for to deal with help and understand the issues and hardships tht these preemies may face after they overcome and outgrow the first part of thepyshical health problems tht thy overcome ....

Heather G said...

I was born at 23 weeks in 1989 and weighed 1 pound 8oz. I definitely struggled in elementary school. I was diagnosed with a comprehension problem until about 3rd grade. I've been able to overcome it pretty well but I still struggle with it sometimes. Math is still my worst subject. I have found that I learn much better visually and hands on versus just being told what to do. So that might help your preemies learn if you show them pictures with instructions and also let them try it themselves afterwards. I am now in college pursuing my bachelors in social work. I still deal with problems with my vision. I found out I have strabismus, lazy eye and exotropia. I had ROP when I was a baby. Unfortunately, I found out these eye problems when I became an adult because the doctor's I went to couldn't figure out what was wrong until now. Otherwise some of the issues I have with my eyes could have been corrected as a child/teen. I am experimenting with my current eye doctor and hoping I can get my license but since I have terrible depth perception I wonder if that is an option at all. I also have a lot of digestive problems. I had my gallbladder taken out in 2008. Doctor's are still not sure what's causing some of my issues. They are looking into endometriosis (I am a female) which is scary since I do hope to have children of my own. Don't give up. Your children can become wonderful assets to society in the future just find the right doctors and demand the right help. :) And if nobody will help you, google doctors/specialists and find someone who can--that's what I did when I got sick of not getting any answers. Good luck everyone. :)

Fishlet said...

my daughter was born at 29 weeks and sailed through NICU into SCBU until 33 weeks then she went downhill and ended up having a blood transfusion. We have a lot of behavioural probs but mostly I believe due to Sensory processing Disorder - common in prems - there also seems to be a fair amount of kids on the Autistic spetrum and with ADHD ect......would I change my little girl - NO WAY - she's amazing !!

Kelly Davison said...

HI,

My Twins were born at 23.5 weeks. I lost one 30 hours after she was born but my other daughter is no 20 years old. I am looking for some help and information as we are having a hard time getting the right information. My daughter is blind in one eye and low vision in the other and is complaining more now that her eyes hurt yet no one seems to think there is anything else wrong. She has extreme pain when her period comes and she has learning issues although no one wanted to test her when she was small and now it is very difficult to get her to agree to testing( as she doesn't want a label on her as she puts it.) It is very frustrating for me and hard for me to help when I don't know how to. if anyone can help that would be great