[Noahsmom711]

Hi,

First let me thank all the nurses here for their hard work in the NICU's across the world. It is undoubtably one of the toughest jobs.

My son Noah, born 24 weeks is now doing great at 26 months. He's running around and into everything and loves his music. He's evaluated out of all services with the exception of speech.
The question I wanted to ask is how common are Brain Strokes in the NICU? Noah had one that has resulted in his Cerebellum deminishing. The N/S are completely stunned because of his developement. He walked at 15 months adj. age and shows no signs of having any problems. He is definately compensating for his loss.
He also had NEC, BPD,CLD,ROP, PDA (close w/meds) and one kidney calcified from medications while in the NICU. He's really doing wonderful considering what he's been through.
The Specialist all tell me he's going to have developemental problems sometime in the future, but so far he's on track for everything.
So do you have any experience with Brain Strokes happening w/the babies in the NICU?

Thanks,
Candi

[Gompers]

Do you mean a true stroke, or an IVH? I've taken care of many, many preemies with IVH of different degrees (I-IV). Their outcomes vary widely depending on how bad the bleed was, how well it resolved on its own, and what the rest of their NICU course was like.

As far as true strokes, I've only seen a few babies with these, and none of them happened while they were on the NICU. Nuclear medicine studies suggested that all of them happened while the baby was still in utero. All of these babies had poor outcomes developmentally, nothing like your son who is running around.

Either way, I'm glad your son is doing well. If he has some learning disabilities later on, you can deal with that when the time comes. My sister-in-law is a first grade teacher and she sees a lot of ex-preemies who need some extra help with school and get different therapies. So he won't be alone, and they are getting better and better at therapies for these disabilities. GOOD LUCK!!!

[Noahsmom711]

Thank you for your reply.. and no I do not mean an IVH. Noah had a grade III on both sides. He has enlarged ventricles which of course we continue to watch every six months he gets an MRI with the N/S.
The last N/S we saw was in Phoenix, Az at Childrens hosp. Now, we are in a different part of the U.S.
The N/S couldn't believe what he was seeing with his eyes. He pulled my husband and I in the office and explained to us that Noah, according to his MRI's should be wheelchair bound.
He said that developementally he's right on track. He was extremely excited. Now, he does have a blind right eye due to the ROP. He's being followed by a Retina specialist at one of the best eye institutes in the U.S. for that condition we just found out that his left eye is going to be 20/80 and maybe better and believe me it doesn't phase this little boy one bit.
I had two unltasounds while pregnant and both of them showed that Noah's brain developed normally. Even the N/S said that he can tell by the MRI's that the cerebellum was there and it grew normally, but somehow between delivery and NICU it has disappeared. He has normal CSF flow and he's considered stable w/hydro. Now, he does still have the stem of the Cerebellum but when you look at the MRI it looks like a tree that had it's leaves shaken off.
So far the N/S have told me that it had to happen at delivery or in the NICU.
He has no shunt.

I have just been wondering how common brain strokes were in the NICU or if you even ever see them at all.

Thanks,
Candi

[BittyBabyGrower]

Wow, are you ever lucky!

I have seen kids that were born early, the cerebellum was there and then it begins to atropy..usually because of some sort of vacsular problem where the vessel that feeds the cerebellum has a defect in it and the blood supply is lost. Most kids that have a stroke either have it in utero or shortly after delivery.

[Noahsmom711]

Thanks BittybabyGrower for that info. I didn't understand really about the Atrophy. I guess since I'm not a nurse or a doctor it's really hard to understand.
I'm just trying to be an advocate for my son. He's so special to me. I do have a degree in Psychology specializing in Child development and as far as I can see my son is doing well.
We did just take him to his NICU that he graduated from and he had to show off for all the nurses and they were so happy to see how well he's doing.

Sometimes I feel like I'm a little backwards toward diagnosis with my son because there have been many times the doctors would have been wrong. They wanted to shunt him on serveral occassions but I refused it only because I was going with what the N/S the followed him told me.
He did not feel like he needed a shunt. He doesn't have the characterisics of a hydro baby (large head or visiable vessles) etc... so I have really had to stand my ground and fight for this little guy. His pediatric surgeon use to kid around with me telling interns that here's the mom with a PHd in Neonatalogy. I swear it sure feels like you have earned a PHd after you go through the process of raising a 24 weeker, but let me tell you it was well worth every minute that I have been with him.

Now, I truely don't know what our future holds for us so I take it each day at a time. He's still growing and learning each day.

Thanks so much for your response.

Candi

[Jolie]

Your little one is lucky to have such a devoted mom! God bless you both!