seizures at birth - still trying to cope

surferP528

I had an induced labor due to high blood pressure in February. Unfortunately, due to the high blood pressure and what was eventually diagnosed as pre-eclampsia, my baby suffered seizures at birth which actually started in utero due to lack of oxygen delivery from the placenta. After a 17 hour labor, we were told that our perfect baby was seizing and had to be transferred to a children's hospital almost 2 hours away.  We watched her be taken away from us and loaded into an incubator and an ambulance. Fortunately, I was discharged early and allowed to go up to the hospital to be with her. After a week in the NICU and a million tests, EEGs and MRIs, she was put on two different seizure medicines and discharged. She was officially diagnosed with hypoxic ischemic encephalopathy, or a brain injury due to lack of oxygen to the brain.
Our neurologist said that she's doing well now and is going to attempt to take her off of her seizure meds slowly in hopes that after a few months of quieting, the brain will have stopped seizing. This is great news! She is hitting most of her milestones so far (we're not smiling consistently yet) and her early intervention team is happy with her progress. However, no one is able to tell us how this brain injury will effect her development in the future.  The damage to her brain on an MRI was "global" meaning it effected areas everywhere in the brain. They told us that we'll just have to wait and see how she meets or doesn't meet certain milestones. She could have no effects, she could have mild delays, or she could have major issues. We just don't know and we won't know until she hits age 3 or 4.

I felt like I was doing a good job coping for these first 2 months. She seems absolutely perfect to me. She is doing all the typical baby things and all of her doctors seem happy with her progress. I think I'm in a bit of denial about the whole situation. But, sometimes it hits me and things will trigger sadness and anxiety. The more I research about it to try to ease my fears, the worse it makes me feel.  The internet is filled with articles linking this condition cerebral palsy which has not even been mentioned by my doctors. Does anyone have any experience with this condition? Are there any positive stories out there to ease my worried mind? I don't know how to deal with this anxiety until she reaches age 4.

comealongponds

I'm sorry you're going through this. I work with children with varying degrees of HIE on a regular basis and the severity of the disease can vary greatly depending on the extent and location of the ischemia. The extent of disability is, unfortunately, something only time can tell as baby grows and matures as you know. 

It's promising that her neuro thinks it may be possible to wean her off the anti-seizure meds, hopefully that means that the damage isn't too extensive and her brain may be able to "rewire" itself over time to bypass the damaged areas. 

I would strongly suggest staying away from Google as much as you can as it will likely serve no puprose except to raise your anxiety and create new and unfounded fears. If you want to research, ask her neuro for suggestions of websites or books that will give you good information instead of the horror stories that Google typically offers. I would reach out to a social worker at your closest children's hospital, or your daughter's neurologist to see if they know of any support groups in your area for parents of children with HIE or other acquired brain injuries. You can also search Facebook or Google virtual support groups.

arcanejinx

My daughter has HIE-she ended up on a cooling mat etc. we have been told by neuro that she has cerebral palsy and it will most likely affect all 4 limbs. We also just confirmed she has moderate hearing loss from the injury. Right now shes doing way better than they have expected but is still being fed via NG tube due to an oral aversion from her breathing tube.

Ive decided to step away from Google-I'm just handling her issues as they come. I found the more I read the more angry I got at the doctors who I feel are responsible for her injury.  

She he also had seizures but was off the medication while in the NICU. We were told she may or may not develop epilepsy as she gets older-scary but at least we know to watch for it.

Look for Hope for HIE-some of their children are completely fine, others severely disabled. It really is a waiting game. I hate it too. I'm an anxious person but I'm focusing on how strong of a warrior my daughter is and doing everything for her to have the best life.

tuicatmama

Hi Surfer,
My son had seizures at birth due to a neonatal stroke (I didn't even know that was a thing until it happened)- It's was really hard and it's taken a really long time to come to terms with it all (He's 6, has mild CP - and is FINE-- I'm still not quite there). Edit: BUT it's all SO much easier with the passing of time! 

Be sure that you talk to someone, if you feel you need it. The best advice was given to me by NICU nurses- 
1. Mantra- "I will not play what if"- (sounded SO cheesy to me- but it works, even how)
2. Mantra- "This whole thing is a roller coaster; and I will NOT get on"
3. Don't Google! (probably the best...)
4. If you get upset at night, or your mind starts whirling out of control, open your eyes...it's a small thing that can really work

The research on the neuroplasticity (sp?) of the brain of a baby is absolutely amazing. If
there you are happy with her intervention team, that's great- USE THEM- ask your questions and share your feelings!  

Other things that really helped me were tossing out the parenting books, and getting outside. 
Taking things literally one minute at a time...eventually to an hour, then a day...it all takes time.
I hope that things look up for you and your family. Congratulations on your baby! This is a very stressful and exciting time.