My newborn baby has underdeveloped brain

[LittleV2022]

Hi everyone, my DD was born 2 and a half weeks ago. I had a straightforward pregnancy, elective c-section at full term, but when born she struggled with breathing and suffered seizures.

She has since been in NICU, and mri has revealed her brain is smaller than it should be. As a result, she will likely have many developmental delays and physical disabilities. The most apparent so far is that she has stiff limbs and jerky/twitchy involuntary movements. She will be going to GOSH as soon as there is a space for her so the neurologists can assess her.

It has obviously been a huge shock to learn this - all scans were normal, no family history, and we have DS who is 4 and has no disabilities.

I know it's early days so I'm just looking for a bit of support and/or advice from anyone who has been through similar. I'm struggling to find much research on this without a diagnosis, so expect we'll have a lifetime of waiting to see what milestones she may reach.

I'm very up and down at the moment- sometimes (shamefully) feeling like my life is ruined, worried about what challenges lay ahead, letting go of all the hopes and dreams we had for her.

But above all right now, I'm just a mummy who misses her little baby every time I leave her at the hospital, and I'm so scared of what her future holds. All you ever want is for your little ones to be happy and healthy.

Would be really grateful to hear from anyone who understands xx

I’m sorry, this is a really traumatic time so remember to be gentle with yourself, I felt exactly the same way re my life being ruined (it’s normal don’t feel guilty) I was also worried about the impact on my older son, and at the same time would have walked through fire for my baby. I don’t have any knowledge on underdeveloped brains I’m afraid (we had seizures thought to be due to lack of oxygen) but we did go to the neurology department at GOSH and they were incredible, I felt so much safer once we were transferred. We were told some pretty bleak news at our local hospital and his outlook looked grim, but he’s doing so well now (8) and really does make us laugh every day and brings so much joy to all of us.

Congratulations on your baby. My story with my 9 year old is very similar. He has moderate learning difficulties and various health problems. Although life has been challenging, he really is the sweetest kindest boy. He is thriving in mainstream school, he is learning to play the piano and he loves to do sports with his disability sports group. The scariest part is the beginning when everything is so uncertain.