Moderate Ventriculomegaly & head measuring above 99th percentile

[RosieBorealis]

Sorry if this is the wrong area to post this!

So baby was diagnosed with mild ventriculomegaly on Christmas Eve. Since that point we have had many fetal medicine unit scans and a fetal MRI.

Baby now has moderate ventriculomegaly (unilateral 13mm and head measuring above the 99th percentile). I am 35 weeks pregnant. The consultant wants a geneticist to examine baby once he’s born to check for any rare syndromes due to the ventriculomegaly and massive head.

I am so scared baby will have severe learning difficulties and will never be able to live a good life. I don’t feel as a society we treat people with difficulties very well and I’m so scared for the quality of life he might have.

I have a recently diagnosed progressive disability that will likely take away my physical and cognitive abilities. Not sure when or how quickly but I’m so scared that I will end up with a disabled child that I cannot care for because I won’t be able to care for myself.

This whole situation has made me so depressed and I feel no connection with this baby as I’m too scared to. Travelling home from the appointment I couldn’t help thinking how much easier everything would be if I just went in front of a train.

I feel like I want a late stage termination but don’t know if this is even an option or how I could ask a doctor without them judging me or thinking I’m an awful person.

Sorry to be such a downer and put this onto everyone but I just really need some advice.

I didn't want to read and run.

This sounds like a very, very hard situation.

I haven't been in the same one but I have had a baby (twin) diagnosed with a genetic condition in utero which was incompatible with life. He was euthanised when I was 32 weeks pregnant.

It was very traumatic but the right decision for me and our family. And also for him.

Genetic testing takes quite a while and I believe that the doctors would need more info before approving a late stage euthanisation (I prefer this word to termination because it's for medical reasons). But it is worth discussing with them. I'm surprised they didn't do a test once mild was diagnosed so that you could make an informed decision earlier.

Have they given you any idea of what range of difficulties your son may have? My understanding of moderate ventriculomegaly without other indicators prenatally is that usually the child is genetically/developmentally normal.

I remember the total overwhelm of a difficult diagnosis though and want you to know you're not alone.

Please don't feel your alone, yesterday me and my partner found out our baby girl has got a heart problem, which could possibly result in learning difficulties, Down syndrome. They offered me the test to take some fluid from the sac, but I couldn't, I know how your feeling, I really do. Try and think positive, I know my story isn't like yours, but please don't feel your alone xx

Usually don't post but had to reply. My daughter had exactly the same. Moderate bilateral ventriculmelagy measured at 14mm. They weren't as concerned about head size during pregnancy.
Was discovered at 20 week scan. I had a mri at 22 weeks and ultrasounds all the way to end.
My daughter had a ultrasound on her head at a day old. Diagnosis confirmed. She had another at three months.
She had an mri at 18 months. All showed no change and a decrease in white brain matter. She also has diagnosis of macrocephally(sp) which means enlarged head size. They have done a genetic test and am awaiting results.

Thats all the medical side. Onto my daughter. She has met every milestone on time. Crawling 8months. First word at 12 months and walked at 13 months. She is now three and am planning on getting her a pedal bike soon, she talks in fluent sentences and has imagination and sass in plenty. She is a gorgeous girl and even if there are challenges or genetic issues ahead, my world is made complete by her and I wouldnt change anything about her. Let me know if you want any further info as I haven't found much about the condition or long term prognosis.

Didn’t want to read and run.
I just want to send hugs and positive vibes your way hun.

Please never feel like you'd be better off under a train, the world is a better place with you in it xx

You are not an awful person - an awful person would not be as torn up as you are. Try to get some support and advice because this is a lot to tackle, more so when you are so scared.

Can you ask the the dr/ hospital for any targeted support or counselling for this specific situation?
Have you spoken with ARC (antenatal results & choices) yet? If not try them, they have contact details on their homepage. There's also a group for Hydrocephalus support and advice called SHINE that might also be helpful.

Please prioritise calling a support service and getting yourself some advice and support. xx