Sunday, February 4, 2007

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
feeding issues
weight and growth issues
reflux issues
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.


Sam said...

I hear you!

Anonymous said...

I am sorry for such a severe mental health disorder. It must be very tough for you.

Helen Harrison said...

One important consequence of the new MRI research is that it shows the *visible* neurological basis for so many invisible handicaps.

I agree that the visible handicaps are the ones that get attention -- and it almost became a "relief" when our son grew from being a cute but out-of-control-in-public young child into a clearly visibly handicapped adult.

People now look at us with... (I'd like to say compassion, and I think that's part of it)...but mostly they look at us with fear.

Sometimes this really comes in handy. We live in a city (Berkeley, Calif) where there are a lot of sometimes aggressive panhandlers and "street people." They take one look at Ed and give us very wide berth.

The Preemie Experiment said...

Hi Helen,

I would have liked our daughter to have an MRI (instead of the cranial ultrasound done at birth-not at discharge) done before she was discharged from the NICU. I think it would be good to have a "baseline".

But, something has me concerned about the new research where MRI's are done early on. I wonder if docs will say (when the child is older) "there was no damage shown on your child's early MRI therefore he/she is fine."

And, what about inconsistencies in reading those MRI's? Our daughter has had 3 MRI's over the past 4 years. They were all done at different hospitals (over the course of 4 years) and they all say something different. One says "normal MRI", one says "normal MRI of 25 week preemie" and yet another (the first one ever done-at age 4) says something about the corpus collosum and also possible right brain atrophy. Geesh!

Any thoughts on this?

Helen Harrison said...

to the preemie experiment and others:

Yes! Many thoughts, and I'll elaborate more on some of them later.

As some of you know, I'm compiling an MRI/preemie bibliography of articles for the Preemie-Child members. I'll post it here too when I've finished it.

1) MRIs can only show damage on an "architectural" level to the brain. However, there are histological (tissue) studies being done of baboon infants delivered prematurely by researchers put in NICU care and then "sacrificed." There are also studies (by Dr. Mark Scher, at Rainbow Babies...) on brain tissue taken from children who were born prematurely but who died from non-prematurity related causes (eg, car accidents). The tissue samples show that preemies (even regular "feeder-grower" preemies) have scrambled patterns of neuronal migration. I've seen the slides of preemie vs. fullterm brain tissue and they are dramatically different.

The baboon studies show that prematurity, in and of itself, causes a basic level of brain damage.

Various NICU interventions such as being on a venlilator add to this damage. The more days on the ventilator the greater the damage.

In human MRI studies, being small for gestational age or having IVH or "white matter damage" (PVL, cystic or diffuse) adds yet another layer.

The more premature the baby, the greater the overall impact of prematurity (per se) on the brain. So a "normal 25 week preemie" MRI would be quite abnormal if seen in a term baby. Maybe "typical" is a better word to use in this context.

As for the corpus callosum, I've just read a study showing 96% of infants born between 23 and 33 weeks' gestation have impaired growth of this structure, detectable by six weeks of age. By this time, the corpus callosum is typically only growing at half the rate a term baby's corpus callosum grows.

However, during the first 2 weeks of life most preemies have normal corpus callosum growth.

This might be because it can take 14 to 22 days after a brain injury for it to show up on MRI.

Severe intrauterine growth retardation has been correlated with decreased corpus callosum growth during the first two weeks after birth, suggesting that for these babies, brain injuries began before birth.

Serious motor "delay" and CP are associated with poorer growth of the corpus callosum between weeks 2 and 6 after birth.

Growth of the corpus callosum is mirrored by growth of the cerebellar vermix, suggesting a connection between growth of the cerebrum and the cerebellum.

There can be some improvement in growth of the corpus callosum in *some* infants after 6 weeks of age if they were born at over 30 weeks of gestation.

Eventual growth of this structure seems to be determined by how much of the corpus callosum (CC) is present at birth, which might help explain why CC growth and outcomes worsen overall as gestational age at birth decreases.

Ultimate growth of the corpus callosum is related to eventual MDI and PDI scores.

These findings highlight the potential for damage during the first two weeks of life, with ultimate development poorer in those of lower gestational age at birth.
[Anderson NG et al. Detection of Impaired Growth of the Corpus Callosum in Premature Infants._Pediatrics_2006;118;951-960.

I will write more later on about what the corpus callosum is and why it matters.

Got to go grocery shopping now.

terri w/2 said...

This is quite a timely post - yes, Yes and YES! I was *just* commenting on this very topic over on exutero's blog in relationship to "moderate" disabilities. There seems to be this thought that it's not that big of a deal to be mild or moderately disabled - and I was trying to describe what life was like raising a child who I believe would be considered in the eyes of NICU follow-up to be "moderately disabled."

You've done a marvelous job on this one and described what the reality of life for us is like in these situations. Being that I'm coming at this from both ends - having a twin who is very, very severely disabled, and then my other twin who has mild-moderate CP, asperger's and NLD, I can tell you with confidence, that caring for my less severely disabled child has caused me many more challenges. . loss of sleep, worry, grey hair. .she, unlike her twin is very aware of her limitations. She, unlike her twin has a very high IQ, but as I said in the other blog, cannot organize herself if her life depended on it. She walks unaided, sounds brilliant in conversation, writes like a poet, drives, attends college part-time . .she has most of the problems you detail in this original post - high anxiety, mental health issues, constipation (I tell her that her BM's weigh more than she did at birth), sensory integration disorders - we live 1/2 mile from where fireworks are sent off during the 4th of July, and she perseverates about this for days beforehand. .isolates herself in her room and cranks her music so she is not subjected to this. When she was tested in a neuropsych clinic - I asked - how come she can listen to loud rock music that shakes the rafters, but can't stand popping sounds from fireworks that are 1/2 mile away? The answer - she can't control the popping sounds from the fireworks - she CAN control her rock music volume. It's quirky things like that and many more that is so very challenging to families. Our kids are suffering, and we can't make sense of how to help them, and others see a child who functions pretty damn well on the outside - but at home it's a whole 'nother story.

Great job on the post.

Chris and Vic said...

This is my own list of invisible issues--some are repeats

>> Pervasive developmental delay---PDD or "global" delays
COGNITIVE delays/disabilities
>> Social and adaptive developmental delays
>> Sensory integration dysfunction
>> Reactive attachment disorder
>> Separation anxiety
>> Anxiety
>> Hypersensitivity
>> Hyperreactivity
>> Emotional immaturity
>> Self-regulatory problems--including impulse control and primitive limbic
system responses
>> Panic disorder
>> Bipolar disorder
>> Obsessive Compulsive disorder
>> Neurologic tics and absence seizures
>> Autism---Aspergers continuum
>> Symptoms usually defined within the autistic spectrum without the
>> diagnosis
>> of autism'
>> Cerebral palsy--"mild" cerebral palsy
>> Symptoms defined within the spectrum of cerebral palsy without the
>> diagnosis
>> of cerebral palsy
>> Fine motor delays/disabilities
>> Gross motor delays/disabilities
>> Lack of coordination and balance---clumsy child syndrome
>> Low muscle tone and high muscle tone
>> Dysgraphia
>> Retinopathy of prematurity
>> Cortical visual impairment/blindness
>> Speech problems
>> Gastro-esophageal reflux (GERD) and failure to thrive
>> Growth issues related to altered pituitary or liver function,
>> Learning disabilities,
>> Attention deficit disorder with or without hyperactivity;
>> Central auditory processing disorder;
>> Short-term memory problems,
>> Visual-spatial problems,
>> Visual-motor problems,
>> Non-verbal learning disability;
>> Varieties of feeding problems
>> Seizures
>> Hydrocephalus,
psych issues which manifest/get worse as the child nears adolescense---depression, bipolar, schizophrenia;
inconsistent performance/recall,
slow reaction time;
RARE EARLY CHILDHOOD LIVER CANCER RELATED TO HAVING BEEN ON TPN--I believe it is hepatoblastoma (and although it is rare, 3 children on the preemie list have died from it over the last 8 years)

And then there are all those things that you cannot necessarily put your finger on, nor find an accurate way of describing them--the repetitive motor behaviors (Vic does some rocking and rhythmic movements to music, for example)--that people notice, even in a casual brush in the grocery store. There is that obliviousness about social mores . . . that causes Vic to interrupt, not make eye contact, get too close to someone he is talking to, etc. Though it is a perjorative term, I call it "retard-isms". When I try to explain this to Vic, I say "If you do this (rocking back and forth, for example), people will look at you as if you are crazy."
I know it sounds harsh or even cruel, and Bill winces when I say it, I would rather he heard it from me than from others who might not try to explain it, and who might be even more cruel in their ridicule.
Chris and Vic

Wendy said...


I have to use some tough-love with Sierra as well. She is constantly humming to herself, interupting and even growling at other children when she gets over stimulated. I have to tell her that it's annoying to everyone and not acceptable, even though I don't want her to label herself as "annoying". But I would rather that she hear it from me than someone who would be more cruel. I remember seeing some successful adults with disabilities on Oprah and other shows. Each of them had a common experience, which was that their parents expected great things from them and did not make things easy for them. The parents wanted them to be successful in the real world even with their special issues.

The Preemie Experiment said...

Chris wrote: "When I try to explain this to Vic, I say "If you do this (rocking back and forth, for example), people will look at you as if you are crazy."

HI Chris,

I also do this.

Our daughter has learned most all of her social skills by someone telling her what is and is not appropriate (this is the word I use). Many times she comes home from school and will say something like, "mom I pulled my hair today when I got mad (she's 8), is that appropriate?" or "is it appropriate for me to ask someone for help when I can't snap my pants?".

During a recent appointment with our daughter's psychologist, she said the same thing to her! When I questioned her and told her that I too have told our daughter what was simply was not acceptable behavior in public, she told me that she advises parents to do the same. She also told me that kids have to know what others may think of them.

(at least that's one doctor who feels I've done something right.. hehe)

Ex Utero said...


do you know what the incidence of incidentally finding an absent corpus callosum is on head CTs and MRIs in the population at large? I know it happens because I've been there in the emergency room as a trainee when an otherwise normal person showed up with that finding on their scan. It's always been a mystery to me how it seems to be such an important structure developmentally and yet some people live their whole lives without one without seeming to notice.

Helen Harrison said...

To Ex,

I've heard of absent corpus callosum.

The main point of the study [Anderson et al.]of impaired corpus callosum in preemies is that this impaired growth is an easily visualized (by ultrasound) marker for broader brain damage, for example, in the cerebellum.

Can you tell us how many normal people you've seen who lack a cerebellum?

Anderson et al further state "serious motor delay and cerebral palsy were associated with poorer growth of the length of the corpus callosum between 2 and 6 weeks after birth" So, this is a consequential finding.

More to come...

Ex Utero said...


I don't mean to cast doubt on it's importance in development if you're meant to have one and then it's growth is disrupted. I just marvel at the fact that some people are able to function without one. Perhaps you have to start out that way.

I've seen at least one adult that I can recall and a couple of term babies who were scanned for other reasons who had none (of course I don't know how they did). The neurologists tend to be pretty non-plussed about it from what I can tell. You would think there must be some sort of neurologic deficit.

delightful-d said...

Great post! I admire you for posting all your TRUE feelings. I can say honestly, that I've been there. Although, I've not experinced some of your situations, (each child/case is so different) I can say I can relate to a lot of them. My heart goes out to you!

Stay strong. Those are my words I repeat to myself when I'm having "one of those days" with my son! It is exhausting.

Yes, I too, am very greatful for what I have. Being a parent to a 27 weeker is a tough job. Not everyone is cut out for it. That is why I can say, there was a reason why we were chosen to have these little ones! No, we don't have a lot of "noticable" issues, although, a looker from the outside, or should I say, an uneducated, jugemental person may think it is just our lack of parenting all I can say is "they could never do what we do on a day to day basis with our children". They wouldn't survive!

Minnesota Mom

Alexmom said...

Ah, yes, the outward signs of disability versus the ones you can't see. One mother said once, "His wheelchair's on the inside" to describe her son with less visible signs of his condition. Sometimes Alex's wheelchair is on the inside -- and he gets called bratty or spoiled for acting out in the grocery store -- other times it's very clear, even to very small children, that he's different.
I love your blog. I love that you don't back down. I love that you don't put on rose-tinted lenses to view it as a special, different or "Dutch" experience.
The bottom line is, it's hard to watch our children struggle to find their place in the world.

terri w/2 said...

And being in a pissy mood this morning - I would like to add one more to the things I hate about this - it's when you have these issues going on CHRONICALLY and someone with a normal FT says . .oh but that's normal, my child has that too . .NO YOUR CHILD DOES NOT HAVE THAT not to the degree and chronicness that our kids have it. This is so maddening as it is negating, dismissing, patronizing. Grr. .

missgamecock said...

OMG, you hit the nail on the head. I just read through your blog. I am not a micropreemie mom. My daughter was born at 36 weeks on the nose. For so long because she was 36 weeks, they say yeah she is full term. WRONG. 36 weeks babies need that month to cook. My daughter has had several of the issues listed in your blog. The one that gets me is the adult doses of miralax. That is my daughter, adult doses of miralax, lactulose, you name it. She gets severe constipation and will be on it the rest of her life. Sensory issues, she had them. For awhile she couldn't stand the feel of grass. We would put her on a blanket and she would not go near the grass. Water was another one for awhile. She screamed from the moment she was born and hasn't stopped. She has severe asthma/allergies. She also has growth and feeding issues. She never took more than 4 ounces in a bottle and many many days where she didn't eat. She was sick for so long that we thought it was normal. However, she is smart as a whip and has many friends and we are blessed with that. She is now almost 8 years old.We have heard that phrase "but she looks ok" more times than I count and I was just like you.

So with our second daughter. We were in complete shock to find out she was ok. She was born at 35 weeks 5 days. She ate well once she got the hang of it. She hasn't had any of the issues that her sister has had. We even took her to the dr because she was sleeping and eating. Her dr said SHE IS NORMAL AND HEALTHY. I still try and get used to that everyday. I didn't realize till the second one that they were preemie issues becuase we thought it was normal and the drs said "but she looks ok". I have been through every ped in town. We now see our family doctor who takes care of our whole family and knows me and our family history. She had indulged me in tests and visits. We love her.

Anyway, many drs sit there and say there are no problems with 35-36 weeks babies and they are wrong. Some do have problems. 1 had problems and the other is completely healthy and normal. They need the whole 40 weeks to cook.

Helen Harrison said...

Re: Big "almost term" preemies

A whole lot of new research is coming out on this previously neglected population of children, and guess what? Docs are confirming what the parents could have told them all along: there are lots of health and develpmental problems with kids in this group. They are *not* just like fullterm children!

So much attention has been paid in the last 20 years to "micropreemies" that the much larger population of >26 week or >33 week children has been ignored and assumed to be fine. But few people have actually done any follow-up to confirm this assumption, and when they have follow-up...well, they find that not much has changed since the 1970s.

And in all pramturity groups, the outcomes are worse than most neonatologists are prepared to admit.

The Preemie Experiment said...

Terri wrote: "one more to the things I hate about this - it's when you have these issues going on CHRONICALLY and someone with a normal FT says . .oh but that's normal, my child has that too"

*I sure agree Terri! I wish I had a dollar for everytime someone said, "oh my child has constipation too." I want to scream, yeah but have they had it their entire life??"

Missgamecock... you are right... 36 weeks is NOT full term and I resent it when someone says that to me. My son was born at 35.4 weeks and has reflux worse than my 25.5 week daughter ever had. He is only 9 months old now so I'll have to wait and see if he was affected on any other level, by his early birth.

Chris, Terri and Helen... thanks for joining me in educating neos that our little ones are not turning out like the follow up studies are saying they are!

Finally, a big thank you to Helen for always giving us great resources and posting research. Thanks to you Helen, when everyone was living in denial about our daughter, I was well informed and able to be an advocate for her. And, when I got pregnant with my son (huge surprise) I was able to be well informed in order to be in control of my pregnancy (as much as possible). I knew not to allow the over use of steroids and stayed away from mag! I only wish I had known you before my daughter was born!

I look forward to reading all of the comments that everyone has posted. Thanks to all for the overwhelming support!!

Helen Harrison said...

To All:

I am hard at work on the MRI bioliography which I will put up on the preemie experiment ASAP.

Meanwhile, I want to recommend an *excellent* book that you might want to read in conjunction with the MRI studies: Rita Carter's _Mapping the Mind_ (University of California Press, 1998).

It is *by far* the clearest, most comprehensive, and lavishly illustrated book on the brain/mind I have ever read! I'm sure it is available on Amazon.

Just re-reading passages from it last night, I ralized how much the predominantly right-sided brain damage our son's has suffered causes so many of his peculiarites -- like his literalness, inability to understand humor, inappropriate laughter outbursts about nothing in particular, inability to recognize pictures or faces unless he's memorized some authenticating detail, etc.,etc.

It is an absolutely fascinating, beautiful book, and so relevant to our discussions here!

The Preemie Experiment said...

Helen wrote: "Just re-reading passages from it last night, I ralized how much the predominantly right-sided brain damage our son's has suffered causes so many of his peculiarites -- like his literalness, inability to understand humor, inappropriate laughter outbursts about nothing in particular"

Thanks for that book suggestion Helen. I will be getting it as soon as I can. Hubby and I have nicknamed our daughter "literal girl" for appropriate reasons. And humor is something that she only understands if we explain it to her. I still maintain that she only then "understands" the humor but does not "feel" the humor. She will only laugh at a joke if she sees someone else laughing.

Helen Harrison said...

To preemie experiment:

Have you noticed that your daughter's CP is any worse on any one side of her body? Is she right or left handed?

The Preemie Experiment said...

Hi Helen,

Paige has floppy muscles from her waist up and tight muscles from her hips down to her feet. A few years ago her strength was measured and the results showed that she has left side weakness. Oddly enough... she is left handed. Her MRI showed possible right brain atrophy.

terri w/2 said...

Missgamecock & Helen in regard to big preemies with problems. . I am currently dating someone who was a former preemie born approx 6 weeks early. He has multiple health issues that I have wondered might have stemmed from being a preemie- and I hear what you're thinking - I must be a glutton for punishment, right??:)

Also, there were a set of 33 weeker twins in school with my girls and one of them has severe CP. Another girl who was a 32 weeker also had severe CP. The "issues" with prematurity certainly aren't limited to those on the edge.

And yes, the DIDs (docs in denial) as I lovingly refer to them - maybe they need to do a field trip to their local large public school's special ed department and see how many of the kiddos there are former preemies?

missgamecock said...

My 36 week on the nose baby was 5lbs, 1 oz when born. My 35 week 5 days baby was 6lbs, 1oz. Their ped said that the pound that the second one had on her sister made all the difference in the world. We still have issues with my 36 weeker. The 35 weeker is AOK. I am terrified of the next pregnancy. I had Severe Preeclampsia & partial hellp syndrome with the first and Severe PIH with the second one. Thanks for validating the near term baby. I even told the dumb nurse in the hospital that she was a preemie. The nurse insisted at 35 weeks she was full term? WHAT? They wrote full term for the first baby too. Last time I checked, 37 weeks was full term. But I really do like your blog and I am glad that you started it.

Anonymous said...

After reading these posts and reading about the corpus callosum and the condition known as Agenesis of the corpus callosum I can't help but wonder if anyone is certain that prematurity alone caused these problems. Can anyone say for certain that any preemie with these problems wouldn't have been born that way if they were full term? The definition of the condition I read stated the following as causes: "Agenesis of the Corpus Callosum is caused by disruption to development of the fetal brain between the 5th and 16th week of pregnancy. In most cases, it is not possible to know what caused an individual to have ACC or another callosal disorder. However, research suggests that some possible causes may include chromosome errors, inherited genetic factors, prenatal infections or injuries, prenatal toxic exposures, structural blockage by cysts or other brain abnormalities, and metabolic disorders." Sounds to me like it happens earlier then preemies are being born. It also lists the following as signs & symptoms: "Signs and symptoms of Agenesis of the Corpus Callosum and other callosal disorders vary greatly among individuals. However, some characteristics common in individuals with callosal disorders include vision impairments, low muscle tone (hypotonia), poor motor coordination, delays in motor milestones such as sitting and walking, low perception of pain, delayed toilet training, chewing and swallowing difficulties, early speech and language delays, and social difficulties. Recent research suggests that specific social difficulties may be a result of impaired face processing.Unusual social behavior in childhood is often mistaken for or misdiagnosed as Asperger's syndrome or other autism spectrum disorders. Other characteristics sometimes associated with callosal disorders include seizures, spasticity, early feeding difficulties and/or gastric reflux, hearing impairments, abnormal head and facial features, and mental retardation." All symptoms I've read parents mention here. Maybe, just maybe, they would have been born that way anyway and all the condtions are being blamed on being premature. I too am a mother of a preemie, born at 35 weeks and never needed to be in the NICU. He's 4 years old now and is perfectly fine other then being a bossy big brother, a know-it-all kid, and a bit on the lazy side. Some of his development has been a little behind the average for a full term baby; he didn't walk fully on his own until he was 27 months old, but it wasn't for any medical reason. If he suffers from any conditon at all it's being too cautious and not adventureous enough to do things other kids his age were doing (which isn't always bad.)His main problem with independent walking was he tried to once and fell on his bottom and hit his head on his crib. It didn't cause a serious injury, just a small lump with a bruise, but it made him fearful to try again. He also has a lazy streak which if such things are hereditary, comes courtsey of his father. He has had no lasting effects of being born premature.

Anonymous said...

just wanted to tell you thank you for your blog!
I have 2 late term preemies (due to preterm labor)and a 2 very early preemies (due to preterm labor,pProm, Incompentant cervix ) and I am, too, slowly watching later "preemie" complications unfold. In fact, just today I had to take my 28 weeker , (who was 1,110 grams at birth) now 4 yrs old, to an eye exam because she has been having issues with her left eye turning inward. Turns out she has Strabismus Esotropia as well as farsightedness.. her Ophthalmologist told me that even though her ROP resolved in her infancy,It is most like the culprit of her eye issues that have recently surfaced. She will need glasses and/or corrective surgery. She is also very small , mostly linear growth... has global delays, some degree of SID .. 27 weeker who was a little over 700 grams at birth, is almost 19 months now and we are happy to see the home oxygen gone and the hospitalizations are les and less frequant, she is almost 100% G tube fed , has global delays , SID...she isn't walking or able to stand unsupported for more than 3 seconds....her toes are pointed a lot and she seems a lil floppy at the same time but her OT says that there is NO way she has CP of any kind or degree.. so it makes me wonder...
she also has dysphagia/aspiration/ oral aversion-oral defensiveness,Delayed gastric emptying/ chronic constipation ( she is on miralax and lactulose!) just to name a few of her GI /feeding issues.she USED to have life threatening GE reflux and nearly died of aspiration pneumonia. So she had a nissen fundoplication done.
.she dosnt talk but she is starting to babble.she is also quite small... at almost 19 month she is 17 lbs and 26.5 inches tall.... she also has BPD/RAD/and allergies. She too had ROP that resolved around 6 months, but today was a huge red flag for me when I took her big sister in ... it was " it is over but it isn't really over " moment...
i too get " she looks so healthy".."she looks fine" from people. ( today even i heard it twice..) I get " why does she need that feeding tube, she looks healthy! she looks chubby and normal" .. do they not realize that it is NOT normal for a 19 month old to wear size 3-6 month clothing and newborn size shoes?? and for her ribs to break from Osteopenia from prolonged use of TPN and diuretics? and that she used to spit up so bad her lungs collapsed and she started to go into congestive heart failure and kidney failure and that I was told to bring my older children to her bedside to say goodbye because they didn't think she had more than 24 hrs left?? And that she dosnt walk..or talk..?that she is on 11 different routine medications?.? and that she dosnt know how to suck from a sippy cup or bottle..and she still knows how to breast feed not enough to sustain her? that without the tube she would starve and dehydrate to death? that she gets serious respiratory infections from catching a simple cold because her lungs are so scarred? that she gets more than a thousand calories pumped into her body a day but still below the 3rd percentile?? Do they not understand that is clearly far from fine .. why on earth would any reasonable surgeon slice through my daughters body and stick a piece of plastic in her and rearrange her anatomy to keep her from throwing up, for no good reason? I have even heard
"it must be convenient to feed her that way... a machine does all your work!"
and I have to muster up all my strength not to hit them.
I too have been called a whiner, bitter, attention seeker, martyr, and yes munchausens by-proxy...

your blog was refreshing .brutally honest.. and bleak in some ways, but refreshing. thank you again.
(momma of a 36 ,34,28,& 27 weeker)

terri w/2 said...

Anonymous above said: "After reading these posts and reading about the corpus callosum and the condition known as Agenesis of the corpus callosum I can't help but wonder if anyone is certain that prematurity alone caused these problems. Can anyone say for certain that any preemie with these problems wouldn't have been born that way if they were full term?"

There is one way to find out - study outcomes of identical twins that were born prematurely. Seems to me from my contacts with parents of identical twins and preemies over the years, that one is often very disabled while the other is not, suggesting that it IS prematurity causing the problems. Twin studies are often used to determine whether an issue is genetic, congenital or acquired following birth.

In addition, if it is true that these issues are occurring as you say, prior to birth, wouldn't there be markers showing up in blood work or amnio indicating this? And, if this is so prevalent in preemie survivors, shouldn't parents be made aware so that they could have more of a choice in aggressive rescitative efforts of micropreemies?

Rebecca said...

This was my first search on this and the first thing I have ever read about this.

I had identical twin girls born at 29 weeks and they are currently 4 1/2 and perfectly healthy (on the outside). I have been dealing with SOOO many emotional/social issues with them for so many years and today finally thought that maybe, just maybe it has something to do with the fact that they were born early and/or that they are twins.

Thank you for sharing...I will be reading over the comments here to try and learn more because they are having so many rage issues, crying, being unable to control their emotions, horrible time socially, etc...I just didn't know what to do to help them.

BadhamFamily said...

Thank you for this post. My daughter was born at 33 weeks and because she made it out of the nicu in less than a month, we were told we were lucky and she was fine. I have always known that our daughter was impacted by her prematurity in many ways. It has taken 5 years to get help for her. Because her sensory and physical issues are mild to moderate, i had to fight to get her support. Her emotional and behavior issued are directly related as well. Her chronic constipation went undiagnosed for years until now and she has ongoing bowel issues. We are headed for a speech eval now that she is starting school. We are lucky that our pediatrician us supportive in giving referrals do we can get therapy through our insurance. It makes me wonder how much easier our road could have been if she weren't deemed "fine" upon leaving the hospital and had gotten any follow up care beyond well baby checks. My daughter is also lucky is that she has two teachers fire parents and we knew how to advocate for her. Thanks again for thus post!