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newborn with possible neurological damage

post #1 of 10
Thread Starter 

i had a rough labor & my midwife was MIA & my baby was born with signs of oxygen deprivation.  after 12 days in the NICU where she displayed a lot of seizure activity & had a dismal MRI--she is home, medicated with phenobarbitol.  i would like to be as proactive as possible in her care & development.  i have concerns about the medication.  i really don't know where to get started.  has anyone had any experience with this?  any advice?  any tips?  

post #2 of 10

Hi!  My DD suffered a severe brain injury due to lack of oxygen at birth. 


Phenobarb can makes kids sleepy and from what I've heard hinder their development a little.  But it's the go-to med for little ones with seizures at birth it seems.  They'll likely keep her on it for 6 months to a year and if she's not showing signs of seizure activity, slowly wean her off (my DD had more seizures and was on phenobarb for about 18 months I think?).  I was concerned about it too at first, but really when it comes to seizures, there's just no "winning".  You really really don't want them to have seizures, yet EVERY seizure med has a list of possible side effects a mile long.  So I put it in the back of my mind.  Really, the best thing to do is push for the wean as soon as possible (assuming no more seizures).  When you do the wean, watch for signs she's not tolerating it.  The doctors put DD on a weaning schedule that was WAY too fast for her.  We had to go so slow it was ridiculous.


One thing I would encourage you to do is contact early intervention right this very minute.  You said her MRI didn't look good?  She's at risk for delays or even disabilities.  If she has either, the earlier the better to start services and therapy.


My DD's blog is in my profile.  Please don't let the extent of my DD's disabilities scare you.  She's on the very severe end.  She spent 2 months in the NICU and went home with a feeding tube.  If your DD is eating ok, she's already showing good signs.  Let me know if you have any more questions.  Hopefully more people will be by soon.  There are quite a few of us on this board who have little ones with brain injuries. 

post #3 of 10

*hugs*  I do not have any advice to offer, but I couldn't read this and say nothing.  I am so sorry that your midwife abandoned you when you needed her, and that your daughter has these challenges.  It is very clear from even just reading this one post what a loving mother your daughter has. Best wishes, mom.  I will keep your daughter (and you) in my thoughts and on my heart.



post #4 of 10

My DD had a brain injury from birth as well. Hers was an Ischemic Stroke. We had 10 days in the NICU. The radiologist who read her MRI at the NICU told us she would not walk, talk, or know we were in the room. After we left we went to a university children's hospital and the pediatric neurologist was a lot more positive. Said that brian scan on an adult would be horrible, but children's brian's have so much plasticity and can heal a great deal. The first thing we did was feldenkrais therapy. We saw Anat Baniel herself. DD was 20 days old. It was expensive, but I think worth it. DD had a lot of contractures from the stroke, and by 6 months they were all gone. She is two now, and she walks and talks, and god forbid you don't notice she is in the room. :) She has lots of delays, but she is still our miracle baby. 



post #5 of 10

Hey mama.  My dd2 has a similar story.  Rough labor (hbac attempt, transfer, rcs), severe oxygen deprivation, significant brain damage, seizures, phenobarb, etc.


She's 6 years old now and doing well.  She has a significant visual impairment (CVI), microencephaly secondary to diminished brain mass, ADHD (brain injury is a risk factor), mild cerebral palsy, and her IQ is borderline.  I second the importance of Early Intervention.  She's been in therapy since she was 2 months old and I know it's made a huge difference for her.


I understand the concern about the medicine.  But realize that the seizures are much more dangerous.  The phenobarb makes them sleepy, but the doctors will get her weaned off it as soon as they can.  My daughter started weaning off at 6 months.


Much love.

post #6 of 10

My DD has brain injuries - not from birth, but from age 6 months when we found out she had a brain tumor - then she had surgery, then big time chemo, then radiation. She's now 4 yo and yes, she has many challenges, but she is also making progress and developmental gains every day. DD is still on anti-seizure meds (she was on prophylactic phenobarb for a few months after surgery, weaned off that, and then started Keppra when she actually started having seizures 9 months later). 


I still think of DD as being mostly delayed, rather than disabled, because it seems she may eventually gain most of the skills and abilities that neurotypical folks have. But, the timeline is "eventually," and not "on schedule." :) So we wait and see what happens... Life in special needs land, eh?

post #7 of 10

My baby has a similar story (oxygen deprivation at birth) though we have a mostly normal mri.  Though now we are seeing increased tone in our baby so I don't think normal mri necessarily means everything is ok...I think more so it is what you do with your child that makes the difference after such an injury, you really CAN make a difference so start right away with massaging your newborn and gentle stretching.  I have heard "medek" is the best early intervention therapy and we are starting it soon.  Will let you know how it goes.  My son was on phenobarb preventitively as well, I think it's a good idea, if there are any seizures they can cause brain damage and phenobarb is really safe and used a lot in newborns.  Better to prevent whatever you can.  Good luck, please let me know what happens.

Check out this video for a story that really inspired me:  http://www.cuevasmedek.com/teya_mov.html

post #8 of 10
Thread Starter 

thank you for all your replies!  all of your stories & thoughts & suggestions really help!  thank you so much!

birth to three & progeny health have been in contact with me.  does anyone know if these services will help in this situation or should i seek out more specialized help?  i have contacted a feldenkrais therapist & am trying to find out more about medek.

Edited by emconnell - 9/1/11 at 5:42pm
post #9 of 10

Don't remember if I mentioned NACD.  www.nacd.org  We work with them and really love it. 

post #10 of 10

sorry if this thread is a bit old..


My son was born two months ago.  43+ hours of labor, acidosis, meconium in the amniotic fluid and finally delivered by emergency caesarian.  He got cpap for 20 minutes (oxygen), but quickly gained color and had high apgar scores.  Ten hours later, he started seizing.  The MRI was "very bad", and the prognosis we got was absolutely horrible.  Wouldnt walk, talk, would probably be blind, and would more or less be a vegetable and require life long permanent institutionalisation.   They put a do not ressucitate order in his journal.  They were wrong.


Ten days later, he was discharged, much to the surprise of the doctors.  Off his meds, not seizing, feeding well, and with good reflexes and responses.  We went thru hell (and are still working our way thru it), but so far, so good.  He is thriving, eating great, sleeping well, smiling, laughing and cooing, all his reflexes are top notch, he is above average with his motor skills and physical strength..  I honestly cant see any problem with him as far as infants go.  His worst problems are burping up milk and cradle cap.


I dont know, maybe he is a true miracle baby (arent they all?), or maybe there will be more serious problems down the road.  We take it one day at a time, and are just so thankful we have him at all.  One thing I learned tho, doctors aren't infallible, they make plenty of mistakes.  Dont be too quick to buy into a prognosis, specially with regards to the brain and your newborn's development.  

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