25+6 and brain problems.

[BelleSmiles123]

Hi there.

I was wondering if anyone has any experience/knows much about babies born prematurely that have abnormal brain scans.

My son was born at nearly 26 weeks and is now 10 weeks old. When he was a few days old he had surgery on his bowel and lost a lot of
Blood. Fortunately it went well and he recovered.

But recently we had a brain scan that showed a large area of 'cysts' on the brain likely to be caused by the low blood pressure during surgery.

We have been told by a number of consultants to consider comfort care and turning off machines as the cysts cause the brain tissue to die and the area affected is extensive.

We have been told he will most likely be severely disabled and have been given examples of him not being able to walk eat or sit up even - although they cannot tell me the extent to his abilities or disabilities I have been told this brain damage will 100% have an affect on his life in one way or another.

Has anyone had or heard of this? I am terrified. I may have to change my sons nappies for the rest of his life or feed him through a tube. One example of a boy who has had this was given by a doctor and he said he couldn't hear or see or speak. I know I can't get answers but a little hope would go so far right now.

Many thanks.

[LBNM19]

I'm sorry you are going through this my baby was born at 28 weeks a week ago.

I also have a 4 and a half year old son who is severely disabled he has a genetic condtion. He can't walk, sit up and is tube fed.

I no it is a scary thought, we didn't even no there was anything wrong with him untill he was 5 months old it is a degenerative condtion and at the time it was devastating.

However he has brought so much happiness to us and i really wouldn't change him for the world.

Hope you get to chat to someone in a similar situation soon. X

[Yuckky]

Congrats on your little boy

I'm so sorry he is facing these challenges.

Have you got lots of real life support? I hope so. It must all be so overwhelming. Have the hospital suggested anyone who can talk this all through with you that is experienced in this type of issue. I wonder if that might be more useful than random stories in Mumsnet even if they are given with the very best of intentions.

[BelleSmiles123]

Thank you ladies. ☺️

I do have support. My family live far and friends are rather spread out but I have great support at the hospital and talking to other mums there.

I think I will do some research once I get the medical term for what he has and see if I can talk to anyone who has experience with the condision - great idea thanks!!

[Yuckky]

it's good to hear you have RL support although I suspect you also feel very alone too. It's such a sad and difficult situation.

[WhatKatyDidnt]

Sorry you are going through this OP. I found US website Inspire's preemie board a great help when researching various complications that my DD had. It's very active, and serious yet supportive. Link

[namechangedtoday15]

Couldn't read and not post. Thinking of you x

[BelleSmiles123]

Thank you all! I've recently had the capacity to understand what it is....PVL.....anyone heard of it/know any specific forums? Xx

[Ilovefffffffridays]

The cysts you describe sound like PVL.
My daughter has PVL as a result of her being 14 weeks prem.
Her pvl didn't show up on the head scans in nicu. Her head scans were clear but she failed to hit her milestones and pvl was confirmed after an Mri of her brain.
She has cerebral palsy as a result -
There is a brilliant uk Facebook page - PVL

I hope you find strength in what you decide.

[Ilovefffffffridays]

Search UK PVL on fb