How to handle worrying news at the 12 week scan - and telling others

[Penguinpinata]

Hello, I’m currently feeling a little bit overwhelmed and worried, so this is a bit of a rambly post to ask for any advice from people wiser than me....

I’m 39 and 16 weeks pregnant with my first baby, due in March. At the dating scan a few weeks ago, the sonographer and then a consultant picked up that they think the baby has a cleft lip (my local hospital has a Fetal Medicine Unit, so they do a very detailed scan as routine.) They couldn’t say at that stage if it was ‘just’ a cleft lip, or if it was a symptom of something much more serious although they thought the nuchal scan looked fairly good so advised against an amniocentesis at that point till we had the next scan. Because of this uncertainty - helped by the fact I’m wfh full time due to covid - my partner and I haven’t told many people about the pregnancy yet till we know if it’s definitely viable, and it’s hard having to explain to people why we’re not just at straightforwardly happy, but I’m finding this period quite sad as a result, as I’d love to be getting excited and making plans but am instead worrying about what might happen at the next scan and even if it’s only a cleft lip, how that will still mean surgery for the baby and I won’t be able to breastfeed, etc.

I think what I’m also finding really hard is that my trust has cancelled the usual 16 week appointment entirely, meaning I’m not due to see a midwife till 22 weeks so I’m feeling a bit lost with no one really to talk through what might happen at the next scan, especially if the results are much serious or check how the rest of the pregnancy is going.

Has anyone on here has also had worrying news at the 12 week scan and how did you handle telling (or not telling), people - I don’t know if I need to tell anyone at all, but I feel a bit odd pretending that everything is all normal and exciting when I already know the baby will then be having surgery, etc - and I guess I’d love to know if anyone have any tips on feeling a bit less isolated? Lots of my friends have children but none had any medical issues or the pandemic to deal with so their experiences have been quite different, and I’m finding pregnancy apps/books with their jaunty ‘you’ll be seeing the midwife this week! Why not meet friends for a pregnancy yoga class!’ messages don’t quite work in the current climate.

@Penguinpinata - what a complex range of emotions you are dealing with. It is a very challenging path to navigate. I work with many many women who know that their baby is "different" in some way and would be happy to discuss by PM if you like.

That sounds really tough. Perhaps a private harmony test might help identify/ rule out a wide range of possible issues?

Do you know when your next scan is? X

Oh I'm so sorry to hear this OP. Dealing with something similiarish - at a scan at 23 weeks my baby was diagnosed with congenital scoliosis, a spine deformity. He'll probably be ok, but it could be associated with rare genetic conditions they can't even test for and there's a good chance of other issues too. I don't have any advice for you, other than take time off from work and let yourself feel how you feel. I've been feeling grief for the baby I thought I was going to have as well as frantically googling what possible rare problems there could be. I now try and keep away from Google and trust in the foetal medicine experts and my next scan to know more. I've told my manager at work as I had to take time off and a couple of my closest friends which has sort of helped, still I'm avoiding buying any baby stuff and feeling very anxious and I'm not planning to tell people more widely. Husband is very pragmatic and telling me not to get worried when we don't know everything yet as it's not helpful, easy to say hard in practice.

I'd suggest sharing the news with a trusted friend and asking for help when you need it. You should know more when you have your next scan and hopefully while that might not be very positive at least you will know better what you're dealing with.

Good luck, I really hope everything with your baby turns out well and my heart goes out to you.

Tbh I’d just tell people op. I’ve never really got the whole ‘don’t tell anyone until 12 weeks’ thing. I know in theory that it’s meant to prevent people asking about the baby if they weren’t aware you’ve miscarried. But I know quite a few people who kept their pregnancies a secret, but then did inform people that they’re going through a miscarriage, which I thinks a bit strange. I know your situations different with a potential disability to cope with, but if you tell people now you can get the support you need, and the same people who know can support you if the worst happens

I know this doesn’t answer your question OP but I was born with a wider genetic condition that caused a cleft lip and palate. I have only had to have 3 surgeries and people are alway surprised when it comes up as you genuinely wouldn’t know. Surgery has come on a long long way and my scar is tiny. I know you must have lots of mixed emotions but other than some feeding issues when I was very small and then a bit of so each therapy things have been absolutely fine with me from that point of view!

I hope all of your friends and family will be very supportive of you and your baby but you only should tell people if you really want to. Give yourself time to process it first at least

That should have said speech not so each!

I'm sorry OP. It sounds so worrying for you. Praying for you.

Demand to reschedule the 16 week appointment and don't take no for an answer. Do what you "need to do" to get seen.

You should however be able to call your assigned midwife at any time to chat things through though xx

Hey OP, sorry you are dealing with this in such difficult times with so little support.

My Dc did not have a cleft palate but another condition that was diagnosed at the 20 week scan.

I am rushing so will quickly say;

1. Take no notice of talk of ‘sift markers’. I was frightened by the various trisomies and non/viable conditions for which my Dc’s congenital abnormality might be a ‘soft marker. Soft market basically means a completely unproven slight possibility of a link.

1. Do some research amongst other parents.., look here. CLAPA have forums and a Fb page www.clapa.com/support/clapas-services/. There will be other mums who have been through what you are going to.

1. I found it really helpful to know in advance if the birth. It wasn’t a shock in the first moments, I could get on and rejoice in my baby

1. Ask if you can meet the team who will look after your baby once treatment starts. I met our consultant before Dc was born, it helped me know what would happen and gave me confidence.

1. I was matter of fact about telling people, and just mentioned it. I was set up to be my baby’s advocate and ally and be positive and not be brought down by other people’s drama. Be prepared for tactless stuff.

Good luck OP, and I hope you enjoy the rest of your pregnancy. 🙂

Thank you all for your comments/advice (and reassurance @SmokingGun! That is definitely very reassuring.)

@twigletmama the consultant advised against doing the harmony as my blood tests and nuchal scan - they do the tests while you wait at my hospital - have largely ruled out Downs and Edwards (and the other one I can’t remember) as much as they can so he said it wouldn’t really be worth it and better to wait for the next scan and the possible amniocentesis.

@user1471518119 I’m so sorry to hear about your complications, and grieving for the baby you’re not going to have is exactly how it feels. Plus I’m such an over planner/researcher that I looked up everything about cleft lip that I could find and have of course worried myself silly. I hope that everything is as good as it can possibly be for your and your baby.

I have told a few friends and I think what I’m struggling with is the balance of trying to not sound really doom laden but also convey there are going to be issues, especially as I’m someone who always feels guilty if I think I’ve worried people/sounded negative. So I start off by saying there are some complications and then rushing to say that I’m sure it will all be fine, which I think means people like my parents haven’t really grasped this could be quite serious. And then I tell myself I’m over reacting anyway and it could be so much worse.

It probably sounds stupid but as I can’t do anything I sort of wish they hadn’t picked it up till the 20 week scan and I could have had a few months of blissful ignorance after the first few months of fretting about miscarriage etc because of my age.

It seems v late to wait until after 20 weeks for an amnio: most women wanting full info have this much, much earlier.

Sorry you are going through this OP. Could you not ask for a 16 week scan as the 12 week scan showed a particular problem? I'd give them a call and ask, and if not could you go private?

Hi OP, are you anywhere near London? If so (and you can afford it) it might be worth a private scan at the fetal medicine centre on Harley Street. They are really excellent there with all the latest equipment and you might be able to get a second opinion/more info.

They are a not for profit headed up by the head of foetal medicine at Kings. I had some complications in my first pregnancy (mine were placenta related as opposed to baby) and they were really good.

It's a really tough time. Despite lots of uncertainty we had a happy ending and I'll keep everything crossed for the same for you.

fetalmedicine.com/

Yes I’m a bit confused usually if they were very suspicious from a 12 week scan they would bring anomaly scan forward as early as possible. Or refer for more specialist testing e.g foetal heart scan? I would ring your consultant secretary and ask to re discuss it x

@Sunshinegirl82 I’m actually at Kings! I’m keen to avoid a private scan in between as I’d rather wait to know what the people treating me say but also because the consultant wants to wait till 18 weeks (so only a few weeks now) so they can be more definite about what the issues are. He thought 16 weeks would be too early to be definite or for some key parts of the baby to have developed by then, or not.

@bluejava they’ve brought me forward to 18 weeks because they think in my case 16 weeks would be too early to tell for definite what other issues might be present then. And then that’s still time for amniocentesis etc.

@Houndabouttown I don’t have one as yet, unfortunately. I think it’s because it’s still only suspected - although they showed me the missing bit at the scan if that makes sense, and explained what hadn’t developed so the consultant I saw was definite it was a problem - and not officially confirmed, as they need the anomaly scan for that, so I don’t have a consultant yet. I have a letter from them with the report on the issues and in that they said once it’s confirmed at the next scan then they refer us to CLAPA and assign us to the specialists.

That must be so stressful. Keeping everything crossed for you. I hope you get more answers at your next scan x

Can you pay for a private scan ? Depending on result you could then bang on hospitals door

Hi OP, this is tough. It’s really stressful and the current climate makes it even harder. We found out that our daughter might have a disability at her 12 month check and the ‘wait and see’ is so hard as life goes on and you enjoy your life to a degree but it’s like the grim reaper is lurking round behind you - always an uneasy feeling of worry.

So you could very easily say ‘I’m pregnant but there are some concerns and complications regarding the pregnancy but would you mind if we didn’t talk about it/ but we are concerned about xyz’ and you can give them as much detail as you would like. You don’t have to detail if you don’t want to.

Be prepared for people to totally bombard you with optimism which might feel like your concerns are being unheard, minimised or written off. People don’t know what to say so they go for ‘don’t worry it will be fine’ when actually they don’t know it will any more that you do.

If you feel it’s too long to wait you can ask to see someone sooner but if they need to wait until 18 weeks to get a good look there might not be much more they can say. The wait and see is very hard. I’ve been forced to find patience I never knew I had and you will too. The time passes and slowly you get more answers.

Sending love. Xx

Hello everyone - I just wanted to give a quick update after having some really thoughtful responses and handholding after my original post.

I had the early anomaly scan yesterday and they’ve confirmed quite a big cleft lip and palate. They also spotted something else which normally is harmless but in conjunction with the cleft needs further investigation so I had to have an amniocentesis. I don’t know if all hospitals do those straight away or if it’s just because my hospital has a Fetal Medicine Unit where everyone gets seen but I’m quite glad I didn’t have any time to think about the procedure before they did it. We’ll get some results back within 3 days but need to wait 3 weeks for the full range, which I think is going to be pretty hard as we’d hoped that yesterday would give us a definite sense of what we’re dealing with one way or another. We’ll have another scan in a few weeks too, so they can check for anomalies again once the baby is 21 weeks and that bit larger.

I’m currently hiding in bed, having told my (lovely) boss I need a few days off to try to process it all. I’m wishing that actually I had told lots of people about the baby at the 12 week point as it feels like now would be a great time to have lots of support in real life, although the people I have told have been largely lovely. So if you’re in a similar position I’d say tell people! And don’t always hold on for definite answers before you share in case they don’t come for a while and you need support in the meantime.

Good luck for the results penguin

Sorry you're going through this, OP. Hope your news is good news.

You may be able to express instead of formula feeding if that's something you're interested in?
www.laleche.org.uk/breastfeeding-a-baby-with-cleft-lip-and-palate/