Need encouragement - state of shock

[2020babym]

Up to today, I have had the most wonderful Pregnancy. I feel baby rolling and kicking daily. At our 20 week scan today, they told us baby has a cleft lip on both sides, and at first they couldn't detect a stomach. We were referred to a consultant who could only see a very very tiny stomach, she also said it looks like the baby's heart is bigger on one side, but could've been the baby's position. we have now been referred again to another hospital in London but not until Friday so we still don't have any proper results and we just don't know how to feel.

Does anyone have any experience or success stories in any of these things? What does a small stomach actually mean for the baby? We just have no idea.

Thank you x

@2020babym I’m so sorry you’re going through such a worrying time 😔 I hope Friday comes quickly for you and brings good news. Hopefully someone with experience will comment... Sending love ❤️

Sorry to hear @2020babym - they also detected cleft lip and palate for my 20w scan 2 weeks ago and I couldn't quite get my head around it the first few days after seeing the sonographer. It did help to see the consultant a week later for more definitive answers than just maybes and it looks like this or it looks like that.

I'm not sure what a small stomach means but I hope you get answers and reassurance on Friday.

Thank you both I will keep you updated.

@lillianfullstop how are you feeling about your baby's diagnosis? Have they said much about how it may impact the rest of your pregnancy and potentially the birth? X

Hi @2020babym - the first week I was all over the place asking why me, was it something I didn't do right etc. But I think I've gotten my head around it now and mainly just worried for the little guy's feeding issues and having to go through surgery so young (I felt sorry for DD1 getting her first immunisations!).

We were offered an amniocentesis to see if there are other related issues but we have decided not to do it as it carries a risk of miscarriage. We're now consultant-led but have been reassured apart from baby needing immediate specialist support after birth my pregnancy and labour should all be normal.

Which London hospital have you been referred to?

Hope you get some answers tomorrow I felt much more reassured after my consultant appointment.

@lillianfullstop Thanks for replying. That’s helpful to know. My DH has v mixed feelings about the whole thing. I have been wondering about the birth and if a cleft means a normal birth would be too stressful for baby. We are going to UCLH in London for the stomach and heart things, but the cleft will be dealt with at a local hospital in Essex which has a cleft team. I’ve a feeling we’ll be offered an Amnio too but I think it’s far too risky. X

Hi OP, I have a condition called micro gastria (small stomach) which is basically like a natural stomach staple- my stomach doesn't stretch when I eat. Diagnosed at birth when I wasn't feeding properly. I was tube fed every night until I was about 8 but am perfectly well, developed fine, I'm just very slim and have frequent small meals rather than one big one. lots of calorie powder in drinks when I was younger!
This may not be what your baby has but just wanted to share that having a small stomach is perfectly liveable with!
Best of luck

Thank you for your comments everyone. Sadly our baby boy has many issues which are most likely chromosomal issues. We had an Amnio and awaiting the results but even if they are negative he will have next to no quality of life and doctors will be unlikely to operate on him. We have been asked to make a decision no one should have to make. We are devastated.

Oh 2020babym I'm so sorry you are having to go through this, I wish you strength

I'm so sorry. I've been in your shoes and it is really hard. Frequent sessions with a psychologist specialized in pregnancy and birth helped me get on with life again. Don't wait to ask for help if you feel that you could benefit from it.

So very sorry op xxxx

So sorry to read this

So sad, I'm really sorry op xxx

So very sorry to read this xxx

Oh bless you. So so sorry. For your own peace of mind, check and double check all the info they give, so you know for absolute sure. Sending so much love 💕

Oh I'm so sorry to hear that OP that must be so devastating I hope they didn't let you walk out of there without a lot of information, contacts and support. It will be heartbreaking time for you whatever you decide try to stay strong and hold DH close

@2020babym I am so terribly sorry - how devastating and heartbreaking 💔💔💔 I feel desperate for you. Sending so much love to you both and your little boy xxx

I look after babies who've had cleft lip and palate surgery. The results are amazing. You will get a lot of support from your local cleft team. Can't advise on the other things though.
Cleft babies have the most enormous gorgeous gummy smiles!

Oh, so sorry to read your last post.