Devel delay in baby

Posted By D. Overfield on January 18, 1998 at 19:10:59:









We have a 6month old with devel delay
She was born (full term - scheduled C-section) with fluid in her lungs and pneumonia (the pneumonia may have developed from the fluid). She was admitted to a Neonatal ICU (NICU) with normal activity and tone. She spent 10 days on a ventilator and antibiotics. She was given various sedatives and paralytic drugs to keep her still for various reasons during the first 10 days.
The normal recovery is that within 2 weeks off the ventilator, the baby is doing fine and sent home. Not so with us.
She didn't regain her normal tone. She required oxygen initially due to shallow breathing, then to help if she got her head in positions which restricted her airway. She was very sleepy (almost always) and had to be waken for feeds.
At about 4-5 weeks of age,  they ran multiple tests including EEG. MRI, blood tests, .... and everything came back negative. The Neurologist who saw her at this time (who we still see) stated that he thought it would just be a matter of time and she would come around.
At 2 mos of age she came home on oxygen, which she  completely rid of last week. Although the tone in her legs has returned almost completely, her tone is still extremely low in her trunk/neck area. A large head size (which runs in the family) is further restricting her progress.
She is slowly being alert and awake more often, and seems to be making some progress. She receives PT through an early intervention program.
One doctor floated the idea that she had a strange reaction to one the sedative/paralytic drugs where she did not metabolize it properly, and it may take many weeks/months to rid of. The Neurologist said (at her 3-month appt) that he did not think so since the problem still persisted at 3 months.
Another thought is that some type of damage occurred during her multiple intubations (because she extubated herself) which has caused the trunk area to be behind her lower body.
I asked the Neurologist at her 3-month appointment the following questions:
Me: do you know what caused this?
Neurologist: no, but I have seen similar things and I expect her to eventually come around, although I do not know a time frame.
Me: Do you think she would have this devel delay problem if she had not spent time in the NICU for her initial sickness?
Neurologist: No.
Although he says he has seen similar problems, we are having a hard time locating people who have had similar experiences or coming up with an explanation. Seeing that she is making progress makes us hopeful. We are eagerly looking for anyone who has information or similar experiences to what I have explained.
Any help would be greatly appreciated. Please leave info here or e-mail us at ***@****