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Original poster

Support for bad news at 20 week scan

14 replies

Nichola2310 · 15/05/2018 18:47

At 23 weeks pregnant with my first child I have been told that my baby has a life changing but not threatening condition which will require multiple surgeries, the first of which will be in the first 72 hrs after birth. I now have to deliver in a different hospital than planned in Northern Ireland, and then immediately following delivery, be transferred to Great Ormond St. I’m worried sick, and am feeling so depressed. I was already housebound from 16 weeks into the pregnancy so I have very little to distract me apart from working part time at home. I’m just wondering how other people have coped with bad news as a result of their anomaly scan?

OP posts:
Fluteytootey · 15/05/2018 18:50

No experience but here to handhold until somebody wiser comes along. Do you have someone you can talk to? A partner?

Original poster
Nichola2310 · 15/05/2018 20:08

Thank you. Yes I have a husband and a lot of family support, but we’re all devastated.

OP posts:
TinyTerror1 · 15/05/2018 21:35

Hugs. So sorry to hear this. Try to take comfort from the fact that it's been picked up and your baby will have the best doctors in the country working on them. Thinking of you xx

Hopingnwishing · 16/05/2018 11:08

If you let us know what it is there might be people in here who have experience of the same condition and can help?

nervousFTM · 16/05/2018 11:35

So sorry to hear this and thoughts are with you. Please do give ARC a call, they are just so supportive and knowledgeable and will hopefully really help you - www.arc-uk.org or call on 08450772290 or from a mobile it's 02077137486 xx

Original poster
Nichola2310 · 16/05/2018 13:55

I had put up a separate post on the condition but it’s so rare I didn’t get any responses. I have joined some Facebook groups with parents whose children have the condition, but I feel lost with the pregnancy. I don’t feel like I can relate to any of the forums with pregnant women as I feel like it’s only me dealing with all this (I absolutely know it’s not!)

OP posts:
Hopingnwishing · 17/05/2018 07:42

Actually I did respond to your first post as I have met 2 babies with it through work. They both went to Great Ormond street and are fine as far as i know.

TinyTerror1 · 17/05/2018 13:26

I would say that for support your best options are ARC and the Facebook groups you have already found. It's such a rare condition that the chances of your finding someone who is also pregnant to share your worries with is very small, I'm sorry. It's possible that ARC may know of a support group for mums who are expecting babies with serious conditions.

jumpin26 · 17/05/2018 13:31

Hi op

Just wanted to offer some support- we too were told at 20 week scan my now nearly 3yo did had hypo-plastic right heart syndrome
Was worrying and scary and spent the rest of my pregnancy scanned and monitored

She had her first open heart aged 1 as she was and is doing so well

I turned to Facebook groups for a lot of support- there may even be one for 'parents of great Ormand street' I joined one for the hospital which we go to for surgery and that was a massive help as when your in a children's hospital for a long period of time you feel like your living in an alternative reality

My advice for now is it's ok to feel upset and it's ok to cry and scream and wallow and say why me why us. I did that and got it all out of my system and when I was actually faced with the surgeries and hospital stays etc I felt much stronger xx Thanks

elliejjtiny · 15/06/2018 17:22

My baby was diagnosed with a cleft lip at my 20 week scan and then hydrocephalus soon after birth. He's now 5 and has since been diagnosed with learning difficulties too. I found being pregnant after we knew was the hardest part. Because we hadn't met our baby yet the cleft was one of the few things we knew about him. So it felt more significant. Hope this makes sense.

QuackPorridgeBacon · 15/06/2018 17:32

What’s the condition? I’m also in Northern Ireland and went through similar but different. We all thought baby was fine but she was born and a few hours later was seriously struggling to breathe. We found out at the royal that she had a heart condition. Long story short she needed transplant and was getting worse so at around two months old we had to fly to England to wait. It was between great ormond street or the Freeman in Newcastle, we ended up at the freeeman because they had a bed first. She had a rare condition even if the transplant itself isn’t rare. It was terrifying and scary and we had an 18 month old. But we got through it and she is here now being a little terror and loving life in between multiple checks. I will say though, that if we were to find out our next child (whenever that may be) has the same condition we don’t know if we could do it all again.

QuackPorridgeBacon · 15/06/2018 17:37

I’d also advise Facebook groups for the condition. They were a big help to me and explained everything I needed and helped me to ask the right questions to the doctors.

cryptonaut · 20/06/2018 22:05

My nephew has downs and an associated heart condition, this was diagnosed during the pregnancy. He had open heart surgery at 3 months, and then again last year (age 7). He's going to have to have the same surgery every 5-10 years. My brother and SIL were terrified both times but they managed to get through it due to a wonderful support system and are so happy to see their little boy happy and full of energy again. It's tough for them but I know they wouldn't change their decision to keep him, and he is one of the sweetest little boys I've ever met.

nervousFTM · 18/08/2018 09:50

@Nichola2310 just wondering how you are doing? X

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