"severe brain damage" from birth trauma

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"severe brain damage" from birth trauma

Postby jenn0295 » Thu Apr 29, 2010 12:56 pm

My sister gave birth to a beautiful little boy Sunday & it was a traumatic delivery. She pushed for 3 hours and they needed the vacuum to get him out. He had a small seizure right after and was med flighted to another hospital where he had a cooling treatment for 72 hours to reduce damage. He was warmed up yesterday & had an MRI, and we were given the results that he's "severely brain damaged" and they don't know any more than that right now. Does anyone have any experience with this at all? I'm so afraid to ask my sister questions & I don't know if she even knows?
~Jenn

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Postby momtosix » Thu Apr 29, 2010 2:30 pm

I do have experience with this......First off i am very sorry for your sister and family.My cousin had her 4th child three years ago May.She had a very hard delivery and the baby had a seizure at birth.They did a bunch of tests and were given the same news.She lives in a Home near by where they visit a few times a week.The reason they could not bring her home is b/c she needs a Tracheotomy and can not breathe on her own.Now after three years she breathes on her own without machines for a certain amount of time.I am sorry that is probably not what you wanted to hear.Your family is in my prayers.
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Postby bernababe » Thu Apr 29, 2010 7:06 pm

I am praying for your sister and her new baby. I do not have experience with this but I wanted you to know she is in my prayers...
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Our angel Kyle Ethan 07/2007 @ 24wks
m/c 5weeks 4days July 2009
m/c 5weeks April 2011
Baby Fiona due 12/31/2013
PCOS dx 2009

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Postby macleesy » Sat May 01, 2010 9:49 pm

I too am praying for your sister and her little boy.

My situation was quite different in that Connor probably had something wrong with his brain prior to birth. He too had seizures in the 24 hours after birth and then in increasing frequency over the 10 weeks that we had with him. He had other factors which contributed to his passing, namely congenital heart conditions which lead to respiratory failure. At autopsy they did discover that the seizures had caused widespread cell death in the brain. had he lived, he would have had severe cerebral palsy.

The prognosis they have been given is very scary. She may be faced with some very difficult times ahead. All you can do at this stage is be there for her. Does she have other children? One of the biggest concerns I had was the constant guilt at sharing my time between my daughter at home and my son in the NICU, especially if his time may be short. If you can help with that, or with housework, cooking etc, i'm sure that would be greatly appreciated.

Huge hugs, and I'm so sorry your family is going through this. I wish I could share something more positive with you. i would consider contacting a cerebral palsy support group in your area.
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Connor John 26 May to 7 Aug 09
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Postby jenn0295 » Sun May 02, 2010 11:35 am

Thanks girls, for your replies. I am so sorry Lisa, that you had the experience you did. I can't even imagine. Connor is beautiful & it's just not fair. You just never know what's coming & I agree... never take anything for granted. This is showing me that I've done that way too much. I just had my son exactly a month before she had her little Tyler, so this is all so so much to take in right now.
Tyler is off the vent now, which was good news... he's trying to nurse and we're hoping he can escape the feeding tube. Other than that, I know nothing. She mentioned him not crying... that makes me a little sad. Crying is just one of those baby things you assume will be there..

He is her only one, which is helpful right now. I think #1 because like you said, she doesn't have to divide her time (they med flighted him an hour & a half away) and also because this is all she knows... the first night he was at the other hospital, she handled it better than I did because I can't fathom being away from one of my babies right away like that. It broke my heart that she had to be, but she was ok because didn't really know what to expect. I'm thankful for that. She is a stronger momma than I will ever be... I do know that much.
~Jenn

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Postby macleesy » Sun May 02, 2010 7:20 pm

That's wonderful that he is off the vent and trying to feed. Both really great signs :) Praying and hoping that he continues along showing such positive signs.

Connor never really cried either, it was particularly hard for my DH, he just wished he would. He had so much to cry about. It was particularly awful when he had his 6 week vaccinations. Not a peep, just another day in the life of being poked and prodded.

I have everything crossed that your wee nephew comes through this as well as he possibly can. And remember that the doctors are not always right. Particularly in prognosis. The brain is incredibly elastic, and can recover incredibly well given the right attention and therapy.

Tell your sister to learn everything you can about the NICU, ask about every piece of equipment, procedure, medication and talk to his doctors daily about what is happening that day, whether anything has changed. Don't be afraid to question something, especially medication etc. twice in Connors ten week stint when I was there, the nurses potentially could have made drug errors if I hadn't said something. Namely he was supposed to have phenobarbitone stopped that day, and they went to give it to him. Another time they had forgotten to use a ointment for thrush. They are human and make mistakes. Don't be afraid to get involved in his care. Even if he has tubes and wires and it is an inconvenience to the nurses....;) Get him out for hugs, change his nappies, give him a bath. Connors baths were one of the best memories we have of him, he loved them.

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Lisa
Erin Nicole19 Dec 07
Annah Paige 2 Jan 11
Connor John 26 May to 7 Aug 09
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Postby momtosix » Wed May 05, 2010 6:19 am

Lisa I saw the pics of Conner he was beautiful as your DD is as well.

jenn That is a great sign that Tyler is off the vent and nursing on his own.I hope there comes much more positive news each day.Maybe the doctors were wrong.


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Postby bec_83 » Fri Jul 23, 2010 5:16 am

I have experience with this also. Although we didnt find out till our daughter was 10 months old. I had a normal pregnancy and birth but we started notiving DD wasnt doing the things she should be at her age,She started having seizure around 11 months old.She had a CT scan and it came back that she has a very mild case of left hemiplegia which is a type of Cerebral palsy.She also has Epilespy because of it.It was like a death! So shocking and heartbreaking.We are very lucky she is only affected mildly and only with her left hand and left leg. She isnt affected mentally thankgod. She is nearly 4 and doing nearly everything a normal 4 year old is doing beside speech.She sees a speech therapist.She does talk alot but is delayed alot aswel.She will catch up eventually.We are lucky coz it could have been alot worse. She had one botox injection in her calf to relax her leg muscle because of the lack of movment her muscels tighten and she walks on her toes just on her left side and it has worked wonders. She is a very happy girl and you wouldnt even notice there is anything wrong with her unless you saw her walk. Which is getting alot better by the day.She now runs aswel :) Still to the day we dont know what happened. The docs say its just something that happened while she was still in utero. Im now expecting #3 and i think #2 has brought her on alot because she copys where her younger sibling does. Goodlcuk to your sister.I hope all is well!
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Postby betafish25 » Sat Jul 24, 2010 12:07 pm

In addition to what these ladies have said, I would like to also point out babies are absolutely incredible and so are the bodies and their ability to heal in miraculous ways. Since the baby is born it still has the ability to rewire itself to do things a healthy baby does because the brain is still growing. For instance, a girl whose baby was in the nicu with my son was born at 30 wks and was a hydrous baby.. A miracle in itself. Drs actually told her to expect a dead baby on delivery. Anyways he also had a heart defect that they detected and when they did a brain scan the realized the baby suffered a stroke in utero and it had caused severe brain damage. I mean they said most if his brain was mush. That baby is now 7 months old and is thriving. He eats and breathes on his own. He is blind and behind developmentally but other than that a beautiful baby. He also still has his heart condition which cannot be fixed till he his an adolescent but he is doing well. Always have hope and never give up.. Babies are amazing.
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Postby bec_83 » Sat Jul 24, 2010 4:55 pm

Betafish,,, thats exactly what we were told. We didnt start physio till my daughter was 10 months old because thats when we noticed something wasnt right.We were told because she is still young the brain can form new pathways around the scarring on her brain and fix itself. She is doing SOOO well and alot of people dont even know there is anything wrong with her by looking at her. She has come along way and is just so happy!
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