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Severe CP prognosis after HIE

OttoMc

Hello,

I am writing from a neonatal reanimation ward in France, baby in arms, in hope of finding some clarity.

I suffered a uterine rupture and gave birth by emergency c-section (11min from rupture to birth) on the 14th of july to a beautiful baby boy, without a heartbeat. The doctors performed cardiac massage on him for 28 min before retrieving a heartbeat.

He was immediately intubated and received hypothermia treatment to reduce brain damage.

The second MRI results have been shared with us, microlesions with bilateral frontoparian-tal laminar necrosis as well as microCephalic porecarities at the level of the semi-oval centers. The doctors prognostic is that of a severe case of CP, and one they consider to not be compatible with life. Today they are offering end of life care and requesting our approval to stop life support.
Their point of view is that our son will spend his life in suffering, unable to walk, eat or possibly breathe by himself, which is not something we wish for him. But at the same time if there is any chance they are wrong, we could not live with that decision. They also are not able to give me any real case scenarios as they said most parents agree to their offer of ending life support…

I am looking desperately for people who have been through similar cases, for some clarity on what can be expected.

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Comments

chiarieds

Hi @OttoMc - I haven't been in this situation, but just wanted to reach out to say I've read your post & appreciate what an incredibly difficult time this must be for you.

I'd suggest that if you don't understand any of the terminology the Drs have used, you ask them to explain them in simple words.

There's evidence from the MRI that your baby boy's brain has been affected which will have given his Drs an idea of how he'd likely be affected. On the one hand you should be guided by this, on the other your heart will be breaking at making a choice.

You should be given time with your beautiful little baby while you make this important decision but I know you wouldn't want him to suffer at all. It's very hard making a decision for a little one, but whatever you choose you will have made the right one for him. Thinking about you.

mrsBB

Hi @OttoMc

I am truly sorry you are having to make one of the most heart breaking decisions. I would say just don't be rushed, take all the time you need. Your baby is getting the help he needs at this time so you have the opportunity to ask all the questions you need to. I had to make a similar decision years ago but not with a baby, it was one of the hardest thing I have ever had to do. One min I would think what the doctors were saying was correct and the right way to go then the very next min I would think totally the opposite when sitting and looking at my loved one, who with all the tubes etc looked perfectly fine to me, just looked like they were sleeping peacefully, its a very surreal and extremely sad situation. I feel your pain, just take all the time you need, while the baby is being ventilated there isn't really a big rush to make that decision unless you have been told otherwise, still, I would question why, if you do feel rushed. I am sorry I cant be of more help, just please know we are all thinking about you and your baby.