Support threat for people expecting babies with health conditions

[Wombleofwimbledon1984]

Just that really - would anyone be interested in this?

We are expecting a baby with DiGeorge Syndrome in early June and I’d really like to connect to others who have decided to continue a pregnancy with a diagnosed health condition. I think this is all especially scary in the time of Covid because some support from the NHS is no longer there.

Hi!

Think we have spoken before I recognise your username.
I'm sorry about your baby's diagnosis and I hope you're coping okay. Agree with you completely about it being extra tough due to covid!

I'm due 1/6 (but may be induced in 3weeks) to a little baby boy who's been given a prognosis of a lethal skeletal dysplasia. It breaks my heart but what was keeping me going was my family all being there to support us... this is now not the case 💔

I hope others will join this thread too we all need each other.

Hugs 🤗 x keep safe

Hi Misssc, I remember we were talking on another forum a few months ago. I’m so sorry about your little boy. How have you been bearing up? X

@Wombleofwimbledon1984 @MisssC3025 sending you both well wishes.
@Wombleofwimbledon1984- would you mind me asking... there was a possibility our baby may have digeorge as my baby has a right aortic arch, an amniocentesis showed she did not ave di George. Does your baby have a RAA? If so was this what led to the diagnosis? I remember not really finding much information about Di George. Xx

Hi there, just wanted to add that I have a 3 year old DS with DiGeorge. We didn't have an antenatal diagnosis but we would have continued with the pregnancy anyway (obviously that would have been our personal choice and no judgment on anyone else).

I'm happy to answer any questions if I can. You probably know that people with DiGeorge can have a very wide range of issues, and it can affect them quite mildly or more seriously, so our experience is not necessarily what yours will look like.

Wishing you all the best for the rest of your pregnancy

Thanks both. @Ivfmommy2b our baby has a double aortic arch and they did an amnio. I think the chances of it being positive were 6%. Do you know if your baby will need surgery at birth? When are you due? And how are you finding it all?

Thank you for your reply @AshGirl. How did you find out your little one had digeorge if you don’t mind me asking? And how is he now?

It’s the uncertainty which makes it really hard I think. But I suppose I need to get used to that even after he’s born!

@Wombleofwimbledon1984 my little girl was born 27.12.19, she’s now 4 months old. She’s doing really well. They kept us in hospital for 3 nights after birth, to monitor us both (I lost a lot of blood) & they also detected that she had a heart murmur. I was really anxious during my pregnancy of how she would be affected. But she is absolutely fine. She had an appointment in March at the children’s hospital, where they scanned her heart. All was ok & they will see her again in 6 months. They said she may have difficulty eating solids, but for me to inform them if she does. I have attached the report from that appointment so you can see. Xx

Thanks! I’m glad she’s doing so well. Mia is a lovely name :) I think the treatment plan for us is similar - 2 days for checks, surgery if she’s symptomatic earlier but if not when he’s about 18 months. Hopefully it also all goes to plan!

Your welcome, it really helped me to hear from others in a similar situation. Will your little boy definitely need surgery? I don’t know too much about the double AA. Xx

I think so within eighteen months. To be honest I’m not that worried about that part - I think the doctors have it covered. It’s the other stuff that digeorges comes with that I’m really scared about

I can imagine 😌. It’s the varying degree of how it can affect children which is hard to digest as you won’t really have an idea until he is born & a little older. I’m sorry that you are going through this. Xx

@Wombleofwimbledon1984 hello again. I could imagine the unknown is hard to bear... that's the case with us.

We have our moments. Some days are tough others seem like normal. A lot of friends and family are saying how strong we seem, but guess they don't see what we're like behind closed doors.

@Ivfmommy2b I'm sorry about your baby's diagnosis too and I hope and pray you and @Wombleofwimbledon1984 will have babies that need as little intervention as possible 🙏🙏

@MisssC3025 thank you. I’m sorry to read about your baby boy, I don’t know much about his diagnosis, but I’m sending you lots of love & strength. Xx

How did you find out your little one had digeorge if you don’t mind me asking? And how is he now?

Hi @Wombleofwimbledon1984 I don't mind at all

The midwives on the maternity ward picked up that 'something' was wrong shortly after he was born and he got transferred to the neonatal unit. It turned out that he had a heart defect (not picked up antenatally) and one of the doctors mentioned DiGeorge because he was struggling to feed as well and had a small mouth.

We got transferred to a tertiary hospital the day after and DS had his OHS when he was 5.5 weeks old. They did the genetic testing while we were there (which is standard for all babies with heart defects) and brought him home at 8 weeks.

Health-wise he is doing really well now. He is stable from a heart perspective but has struggled with picking up lots of bugs and is currently on prophylactic antibiotics (ie ongoing ABs to boost his immune function). He is on the shielding list which is really tough as we are used to being out and about a lot.

On the development side, he has lots of challenges, especially with speech and language and his fine motor and functional skills. We have speech and language and OT input and he has a 1-1 at his usual pre-school (obviously shut at the moment).

He is 3 so he is sometimes an absolute delight and sometimes really hard work! He is generally very happy and cuddly, always laughing and tearing around the place, climbing and jumping on the bed and throwing water around in the garden. So, pretty standard for a toddler!

PS @Wombleofwimbledon1984 If you are on FB then there is a Max Appeal group for families affected by DiGeorge / 22q. They are a very supportive bunch and you will get a wider variety of experiences.