Cleft lip & baby's stomach is small

[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

I haven't had any experience in this but just want to wish you the best of luck on Friday 💖

No experience but didn't want to read and not send you positive thoughts. You must be struggling to wait until Friday but please try and stay strong until you have some more definite answers x

Thank you both. We are praying for results on Friday that we can work with. Just want my baby boy to be ok, things like cleft lip we will deal with and love him no matter what. But serious issues like stomach and heart, we just want him to be ok x

How’s the overall growth of the baby? By small stomach do you mean abdominal circumference or the actual organ?

I know that the repairs to cleft lip these days are amazing. The other stuff isn't something I know about. I hope when the clear results come through it's nothing.

The actual organ is very very tiny. The first sonographer we saw couldn't see it all which is why we were referred in the first place. Every other growth eg brain etc appears normal

Good luck OP. I hope you get some answers on Friday and they’re positive xxx

Thanks everyone - v overwhelmed with no questions answered is a v difficult position. He is still very lucky and rolly though :) naughty baby.

No experience either OP but wanted to wish you all the luck for Friday

I don’t have answers either but good luck. My son had a small abdominal circumference and it was the beginning of a growth restriction. He is now a healthy happy child. I think you’re case

It’s very good you are following things up and hopefully you are in good hands.

Such a worrying time for you OP x Have you had any genetic testing done? Are they offering you any? It would be absolutely worth getting some done, to rule out conditions as well as prepare for the future. Small/absence of a stomach and heart conditions are very serious, but may be manageable. Wishing you all the best for your next appointment.

Hi, I’m really sorry you’ve had such upsetting news and it is going to be a long wait until Friday.

The significance of the “tiny stomach” is that they baby may have a problem called a tracheo-oesophageal fistula which is a structural abnormality of the oesophagus (food pipe) and trachea (windpipe). There are several different types, but in summary, it means they have abnormal connections and the oesophagus may not be attached to the stomach. These problems are managed surgically once the baby is born and often need long term follow up.

The significance of them also having noted that the baby has a cleft lip is that these problems are both affecting what we call midline structures. There is a syndrome called CHARGE syndrome which is where a child has a collection of these midline abnormalities - sometimes they may have 2 issues, sometimes more.

I am sorry that this must all be such a shock to you. I look after a lot of children with CHARGE and whilst there are likely to be medical hurdles to overcome, most still have a very good quality of life.

@Anaesthetist83 thanks although just to be clear when I say small stomach I mean the actual organ and not the baby's abdomen- so his actual stomach bubble is about 3 times smaller than it should be - from having a quick look at what midline structure means, I don't think they appear to be the same?

Thanks for your help & insight x

I know you do - that’s what I am referring to. A small or absent stomach bubble is an indicator of a tracheo oesophageal fistula. In combination with other problems ie cleft lips, suggests potential for an underlying genetic cause. CHARGE syndrome is a description of a group of what we term midline defects which include TOF, congenital heart problems and Clefts

It may be that this scan is “over cautious” on the basis of a cleft lip/palate having been noted and they have therefore looked at other organs with that knowledge and they may just be variants of normal.

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.

Sending you a massive hug OP, no one should have to have this time turn into such a one of sadness and heartbreaking decision.
Whatever happens, please take support from those closest to you and whatever you need to do. I can't imagine how you must feel but know it's nothing you have done

I'm so sorry, there's not really much else to say is there, but I'm can't imagine how difficult this must be for you both.

So very sorry to hear this. Wishing you the strength and love to endure this time.

Very sorry to read your sad news. I hope you are at least fully informed for your decision making.

OP I am so terribly sorry. My heart aches for you. X

I'm so.sorry @2020babym

I've been there. It's just awful. The ARC-UK helpline is great for advice/a listening ear/someone to stay on the line while you cry. There are posters on the antenatal testing section here who have also been through this, and will.offer support.

I am so so sorry to hear that. Massive hugs to you

Oh God, I’m so sorry OP. Wishing you strength to face what is to come.

So sorry

I'm so very sorry to read your update @2020babym. Sending love and hugs to you both.