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Forum Name: Pediatric Topics

Question: Former 24 wk Preemie/Developmental/Neuro Issues


 xtremewyo - Sun Aug 19, 2007 1:50 pm

Hi, I am really confused as to what my next step should be. My daughter will be 3 in October, and was born at 24 weeks premature. She weighed 1# 10 oz, and stayed in the level III NICU for 165 days. Durring that time she had many many issues but the ones most relevant would be:
Left IVH Grade 3: onset 10/10/04, self resolved 01/13/05 and Venticulomegaly-Post-Hemorrhagic: which was supposed to have a follow up MRi, but never did.

Currently she has been displaying numerous developmental delays, including a 18 month expressive language delay, receptive language delay of 16 monthes, Adaptive skills, personal social skills, and cognitive skills delays. She has also been recently diagnosed with sensory intergration disorder. All of which she recieves speech, developmental and occupational therapies for.

Her current doctor has not been her doctor since birth, but does have all of her medical histories. And is not specialized in any subfield of pediatrics. Before I took it upon myself to have my daughter tested for developmental delays I brought up the concern 4 seperate times to the Doctor, but always got the same reply of, "oh she's fine, some develop slower than others."

Now my concern is that even though she was premature she is showing numerous areas of huge gaps in development. I am really concerned that the IVH has left some sort of damage that we don't know about because no one has followed up on it since we left the NICU. When I voiced my concerns to the doctor over this, he told me not to worry and wait it out and things will get better.

Could her current "issues" be due in part to a larger underlying problem from the IVH? From what I understood in the NICU there could be varying degrees of damage from the IVH, was this understanding correct, and if so what steps should myself and my medical team be taking to access the outcomes and ensure she is recieving all the help she needs? Or all these symptoms classic of something else tottally not IVH related? Sorry for all the questions... Sometimes this whole thing can be overwhelming!
Thank you!
 Dr. Chan Lowe - Tue Sep 04, 2007 3:15 pm

User avatar Hi Xtremewyo,

IVH is a very common problem for extreme preterm infants. Grade III is a fairly severe IVH. It can certainly have significant impacts in future development.

I would recommend that your child have a formal developmental screen. If there is a developmental pediatrician in your area this would be an excellent resource.

Continuing the therapies will also be important. It is possible that her development is slow but normal; however, there is a good chance with her prior IVH that her development may not be normal. Formal testing is the best way to determine this.

If a developmental pediatrician is not available or there is no way to have a formal evaluation done, there are developmental scales (such as the Denver II developmental scale) that can be used by your regular pediatrician to get a better sense of her developmental status.

Best wishes.

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