NICU parents choice or doctors

[Sal2917]

Hi, I have had very premature twins at 24+6 weeks and one twin was measuring two weeks behind. The bigger twin weighs 650g and the smaller twin is 350g. The smaller twin has shown a grade 3 bleed in the brain on the first head scan and the bleed had grown by the day 3 scan. The doctors have said this means there is a high chance the baby will have a disability. The bigger twin is showing signs of albinism it is born with white hair, the doctor said they will do tests to try and confirm but as I have an albino cousin it is likely it is albino.

I just wanted to know all the facts and was hoping someone here knew more so could help me without judging my questions. Would the doctors listen to the wishes of the parents if we wanted to withdraw care due to the high chances of disability or do the doctors get to override the parents wishes if they think the child’s disability for example being albino and the bleed in the brain as well as the extreme prematurity isn’t enough reason to withdraw care and let nature take its course?

[Bandanadrama]

I don't know the answer but wishing you well.

[weebarra]

I really don't know and my thoughts are with you and your twins. I know people with albinism can have eyesight problems but I'm not sure of any other issues, and obviously eyesight issues can be related to prematurity as well.

[Bandanadrama]

I'm bumping this for you OP.

[SiouxsieSiouxStiletto]

I honestly don't know but just wanted to offer some virtual support

[Farrowandballbag]

First off, I'm sorry your twins were born early and are so poorly. Having worked in NICU, the doctors will be very open to discussion, but probably don't want to broach it yet in case you're not ready. Neonatologists are very used to having difficult conversations and helping parents make decisions, so if you bring it up, they'll certainly be willing to talk you through it all.