mini rant

I just need to write this down so it is out of my head and I can move forward with my day.

I intensely dislike when people tell me that my baby is fine, that he will catch up by the time he is two, that everything is going to be okay.

I hope against hope that he is fine. (but really, isn't that relative, what does it really mean?) (and actually, no matter what, he is fine to me. we are fine. so stop saying it.)

I know for sure that he will never catch up in the way that they are suggesting because his brain is physically different that that of a full term baby. He will never grow out of his premature brain. This doesn't necessarily mean that there is something wrong, it just means different. This is a medical fact. A neurologist can look at an MRI of a full term baby, now grown, and a premature baby, now grown, and see physical differences. They can even estimate how early the baby was by looking at the grown brain (oh, a 24 weeker, or a 34 weeker) Premature babies brains have less myelination which means their neurons fire more slowly (imagine a house with wiring that doesn't have enough insulation). They suffer from sensory interference. How to explain? Hm. Because they saw light when they were not supposed to be seeing light, their hearing can be affected (this can mean hearing loss or an auditory processing problem). Because they heard sounds when they were not supposed to hear sounds, their vision can be affected (ROP, other visual problems, visual processing issues). Your brain gets one chance to develop and you can't go back and regrow it - the way it develops is permanent. So my son's brain will always be different than if he had been born full term. So, he will never catch up and be like a full term kid in the way that people are suggesting to me. Not necessarily bad, just certainly different. So stop telling me not to worry or watch because he will catch up. Seriously, stop it.

And please please please stop saying that everything will be okay. Because nobody has those assurances. Things in life suck it and suck it hard sometimes. That doesn't mean things aren't okay. Really. The biggest lesson I learned from our NICU experience is that things are random, things are hard, and at the same time things are beautiful and magical. No one knows the future, but I do know that it won't all be perfect. However, it is our future, and it will be filled with both good and bad times. What you can do is be a good friend when the times are bad. That is all I really want to do for my friends. I can't tell them that their mom's will get better, or they will find a job, or that their kids will always be healthy, but I can tell them that I will be there to listen, to hang out, to babysit, to make food or do laundry when things get hard.

So, rant over. I feel better and ready to start my day. Feeding specialist at 9:00, physical therapy at 1:00, a whole lot of fun, and love, and music, and play in between.

Comments

[Jennifer]

You are awesome. I wish we lived in the same city/town.

[-E]

Hi- I have a 25 weeker who is now 18.5 months actual. I did want to share with you that you should google about a large, recent study (sorry I've forgotten all else) in which myriad developmental/premature and other specialists interviewed and assessed full term and former micropreemie adults. Statistically, they were completely unable to discern who was whom and the conclusion was that the micropreemies ended up "normal". The only difference found was in level of education completed- the micropreemies tended to have less/drop out out of college (motor planning issues?), but were not statistically different in ranges of IQ.
-E

[christy everett]

Thank you for saying that--I too bristle when I hear: And he's doing fine, now--said as a question but more as a directive because its easier for others if everything is OK. So thank you for putting these feelings into words.

I think the study refered to by E,was printed in the NY times; I have a copy of it at work. The study compared quality of life issues such as education, employment, marriage etc. And the outcomes were positive. But it did not address the extra work that our little survivors put into "catching up." The details we know as parents who love them--a hopeful end picture study though.

[Keri]

I have a friend who has a 15-month-old who was born early so this rant definitely helps me put things in her perspective. Thank you for sharing your feelings and I will be sure to be more conscious of what I say to mothers of preemies.

[Kathy Ramsey]

I loved your rant. I have a 26 week daughter who is now 13 months old. People just don't know what to say, so you kind of have to excuse them a little, but it's frustrating how pretty much nobody in the outside world understands prematurity at all. I think I might scream or worse if I hear one more story about someone's cousin who had a premature baby at 36 weeks, "and the baby is fine." ARRGGH!!!

Anyway, good wishes to you and I also wish we lived closer.

[Allison]

My son is a former micropreemie and he is now 13 years old. He is living proof that a former preemie can APPEAR normal but be radically different. He was a 28 weeker and 1 pound 9 oz when he was born, had no brain bleeds and no extraordinary care in the NICU. He left the NICU right before his due date at 4 pound 8 oz (I think.) He now is 13 and weighs 100 pounds. Amazing since he was on a feeding tube on and off until age 5. He is DIFFERENT. His brain does NOT think and operate the same as the other kids. This does NOT mean he is dumb - but he does process things differently. He does not do well in school and school is VERY difficult for him to master. He clearly understands 80 percent of what he is taught but he can't perform on a test. He can't adapt his knowledge in a test taking environment. He is a great reader, a terrible math student, a lover of science, a funny kid, very social, loves music, nice, obnoxious......in other words - he's an ordinary 13 year old rebel. BUT...he does not process information in the same manner as other people and it is difficult to access what struggles can be overcome with hard, hard work and which ones simply must be accepted as his best.

[Allison]

My son is a former micropreemie and he is now 13 years old. He is living proof that a former preemie can APPEAR normal but be radically different. He was a 28 weeker and 1 pound 9 oz when he was born, had no brain bleeds and no extraordinary care in the NICU. He left the NICU right before his due date at 4 pound 8 oz (I think.) He now is 13 and weighs 100 pounds. Amazing since he was on a feeding tube on and off until age 5. He is DIFFERENT. His brain does NOT think and operate the same as the other kids. This does NOT mean he is dumb - but he does process things differently. He does not do well in school and school is VERY difficult for him to master. He clearly understands 80 percent of what he is taught but he can't perform on a test. He can't adapt his knowledge in a test taking environment. He is a great reader, a terrible math student, a lover of science, a funny kid, very social, loves music, nice, obnoxious......in other words - he's an ordinary 13 year old rebel. BUT...he does not process information in the same manner as other people and it is difficult to access what struggles can be overcome with hard, hard work and which ones simply must be accepted as his best.