Pregnant with sn child - all at sea

[Wombleofwimbledon1984]

Hi there

I’m reposting this from the normal pregnancy board as I think this is a better place for it

We have found out our baby has DiGeorges syndrome and after a hellish two weeks have decided to keep the baby. It’s very hard to visualise what problems he will have because the spectrum of the syndrome is so large.

I am 26 weeks pregnant and would really appreciate some sort of advice as to how to get my head round all this. What should I prepare for? What support is out there?

Less so the medical stuff as now we are diagnosed we will be going to a hospital with a big specialist centre. More the emotional - how do I get excited with all this worry? What should I tell people?

Insight from anyone who has been pregnant with a special needs child or has a special needs kid now would be really appreciated xxx

[x2boys]

My son doesn't have this but he does have a different chromosome deletion and as you say the spectrum of what could or could not happen is large and things only become apparent or not as your child develops are you a member of Unique ,the charity/ support group for rare chromosome disorders ? Also have you looked on Facebook as there might be a group on there for families such as your,s , there is for my sons deletion .

[elliejjtiny]

We got one of my now 6 year old's diagnosis's (is that a word?) at the 20 week scan. We were very well looked after by the fetal medicine specialists and we also met the team who would be treating our baby after he was born which was quite surreal but also reassuring.

I found the pregnancy was the hardest bit emotionally because of all the unknowns. With telling people I found the best way of doing it was very matter of fact and cheerfully. For the people we told via email, text, facebook etc we wrote something like :" Introducing baby elliejjtiny, due July 2013. As you can probably see on the scan photo, baby has a cleft lip. We are looking forward to meeting him/her". With people we told in person we just tried to remain upbeat about it even though I was panicking inside as I was determined that my baby was going to be celebrated in the same way as my older dc had.

[roughtyping]

Hello,

My 4 year old has this (also called 22q deletion syndrome). We were really shocked when we found out in January - he is at the more mild end of the scale. We found out as he has VPI which has affected his speech and met the right speech therapist who knew what to look for!

My recommendation is to get in contact with the Max Appeal charity. It was set up by parents of children with the condition and it is all worded in a parent friendly way. There are so many support groups on FB etc but lots are American so a very different experience healthcare-wise. Max Appeal are absolutely fantastic and it can help to read through what other parents have experienced.

Please feel free to send me a message if you want to chat. I'm only just starting to get my head around our son's diagnosis so it's all very fresh in my head.

[roughtyping]

Also it can be very hard to get your head around the 'wait and see' aspect of finding out how your child is affected, but this just continues for kids with the syndrome, as I understand. Please contact Max Appeal. And remember that you don't owe anyone an explanation of your child at all. It can help people to understand your child and difficulties you might (very big might!) face together.

[Wombleofwimbledon1984]

Hi all, sorry for coming back to this old thread. It’s my first day back at work today and I’m having a really hard time - there are quite a few pg women here looking happy, presumably with healthy babies. Colleagues know, I think, but no one has mentioned it.

@elliejjtiny how did you get through your pregnancy being so scared?! I’m really struggling and keep crying in the loo xxx

[elliejjtiny]

@Wombleofwimbledon1984 I remember doing a lot of crying in the loo too. I found a lot of people said that the Drs might have made a mistake which wasn't really helpful and there were a few people who thought they knew better than the Drs about when he should have his operations. Also there was one or two people who thought ds should be hidden away and not taken out in public which I thought was awful.

I think it was my then 6 year old ds1 who helped me the most. He was just so excited to be having a baby brother. He wasn't worried about anything and he was really upbeat and positive. After ds4 was born, ds1 spent ages reading to him in nicu too.

[Wombleofwimbledon1984]

Thank you @elliejjtiny. How is your little boy doing now?

[Wombleofwimbledon1984]

I can’t believe people saying he should be hidden away. Some people are so ignorant and awful!

[x2boys]

Unfortunately there are some ignorant folk around ,you tend to grow a very thick skin if you have a child with disabilities ,that's their issue not mine,I will give as good as I get now if anyone makes any unwarranted comments about ds2_

[elliejjtiny]

Some people really are awful. But also some people are very kind. While I had close relatives telling me I should hide my son away I also had mums from my older dc's school who I didn't even know coming up to me and asking how he was when he was in nicu. I'll also never forget my older son's teacher who had a go at an ofsted inspector for saying something awful about my little boy when he was recovering from his first operation.

@Wombleofwimbledon1984 He is doing well thankyou. He has had 21 general anaesthetics for various things including 2 major operations. He has a beautiful smile. He is very loving but also extremely stubborn at times. He can write very slowly with help and read as well. He can learn things but it takes him longer than most people. He likes to help, especially with the hoovering.