Baby has severely small chest- please help :(

[MisssC3025]

We would really like some advice, help or similar stories to help us during this tough time.
At anomaly scan, we were told our baby boy has short long bones (off the chart) in both arms and legs. In addition, baby's chest was measuring "severely small". We went to three different hospitals and our last appt was yesterday at King's College hosp where three specialists and consultants told us the same thing. So overall we have had 6 people in the last month highlight the same problems. We have been told by all of these professionals that our baby is highly unlikely to survive, as his lungs won't have space to breathe when he takes his first breath.

We are broken 💔 confused and in denial.
We have been given an option to terminate. Every hour, our minds flicker between "termination is the way forward" to "no it's not the end we need to see it through".
If anyone has gone through similar to this or exactly the same or just can support us in anyway we would so greatly appreciate it.
We feel so alone despite having the most wonderful family and friends. We know the decision lies in our hands 😢😢

I can't offer any advice but here for a hand holdI'm so sorry you're going through this. Sending love

So sorry to hear this. Have the hospital offered an Amnio or anything to try and find out if anything is going on chromosome wise to cause it? Or give you a bit more of an insight in to what is going on, it sounds like whatever is going on hasn’t properly been explained to you by the hospitals and this must be a very confusing time for you!

@byefeliciabye thank you so much 💖

@Catlover10 yes I'm sorry i missed all that out 🤦🏻‍♀️ mind is scrambled. Had amnio 3weeks ago to check for "thanatophoric dysplasia" most lethal type. Had to have a blood test too to double check and came back clear that that wasn't present. Other types of skeletal disorders aren't able to be distinguished until baby is out of the womb for X-rays etc... 😭

I'm sending hugs as I have no clue what to say that could help but couldn't read and run x

Sending love and major big hugs.

I havent experienced this. Friends of ours were told their baby had various medical issues and was not going to live for very long after birth. The decision to have a termination or to go through with the pregnancy... They said they don't how they got through it because no one could help them.

Their story is they went through with the birth. Their baby died. But they think they lucky because it wasn't within hours, it was a week later. Then more heartbreak.
I don't think there's a right or wrong. Everything will hurt. I hope your heart can tell you what you want to do.

I might feel differently if it was happening to me, but my initial thought on reading your heartbreaking post is that I'd want to terminate because I wouldn't want to put my baby through that.

No decision is wrong though. Do what you feel is right and what you feel you can cope with.

First of all hugs

There will be a specialised team who you can talk to regarding options but they won't tell you what to do, just guide you through the process. They cannot tell you an exact prognosis but from the ultrasound they can tell that your baby is likely to be severely disabled if they live, only you can decide - the worst decision but be assured no one will judge you whatever you decide here.

I went through extensive testing following anomalies and we were the lucky ones, but I'm acutely aware life could have been very different.

@MissCherryCakeyBun thank you means a lot 💖

@Billyeyelash thank you for sharing this story about your friends. It's so sad they had to go through with that 💔 I hope our hearts can tell us soon too.

@katewhinesalot thanks for the post. We completely understand what you're saying as this is what's running through our minds too! We don't want our little boy to suffer either. I really hope in time we will decide what's best for us.

@okiedokieme thank you for your post. I'm so happy your outcome was lucky 🙏 we are going to try and speak to teams out there who can offer support. I hope this will help us 🤞🏼💖

So sorry to hear this. I have been through losing a child (aged 1 so different circumstances) and I honestly can’t tell you whether to terminate or continue with your pregnancy. Is there any chance the baby will survive?

Have you spoken to arc?

I carried my baby to term knowing they would die at or shortly after birth. It was the hardest thing I've ever had to do but I don't regret it - I felt they got to have their life, and we loved them and were able to meet and say goodbye to them. So sorry that this is happening to you.

@Robs20 I'm so sorry to hear this too 💔💖 no pain can compare to losing a child I'm sure!

We have been told by each consultant that it's very slim. The lady yesterday said there's no chance he will, because of how severely small the chest is 😢 I can't help but hope they're wrong 😢

I spoke to arc who advised us to get referred to London hosp. So DP and I would like to call them again at some point for the next step as they were great. We may call later this afternoon.

@Boyo7 this breaks my heart and filled me with tears! You're so brave and wonderful to do that! That's what DP and I have discussed. Little boy deserves to see us and have our kisses and cuddles before he dies. However, at same time, we panic that he may survive a while longer and be in so much pain. I don't know you can see how messed up my head is right now. We're going through 1000s of possibilities and they're all so hard to cope with!

If you don't mind me asking- what was wrong with your little one? Completely understand if you don't want to say. 💖💖 just thanks for posting means a lot x

Sorry to hear this :( not exactly the same but
I'm 23w and have had 4 scans in the last month, as baby is also measuring very small (long bones too!).
Only a few days ago the consultant mentioned something about the blood flow to the heart which wasn't mentioned at all previously.
They also mentioned possible chromosomal defect/genetic condition but we did refuse Amnio testing.
Really can't advise what you should do but it's great you're being seen by experts. They will guide you to doing what is the best decision for you. Sending hugs

Oh OP. I'm so sorry. This is heartbreaking.
I'm the sort of person who always thinks 'what if' I think I'd have to see it through. You know chances are they're probably not wrong but I'd always think what if there was a chance they were wrong.
How far along are you?
The choice is completely personal but whatever choice you make I hope you somehow find comfort in whatever choice you make

This is such a dreadful situation to be in, I’m so sorry.

There just is no good option here, it’s a case of the least-worst option for you and what you feel you could cope best with.

You will hear stories of when doctors got things wrong and of course this does happen in some situations.

A late stage termination would be incredibly difficult for you, as would continuing with the pregnancy. If you choose to continue and see what happens from there, the staff will do everything in their power to minimise any suffering for your baby, but there may be limited options.

I work in my local maternity service and the services for those who are losing / have lost a baby are exceptionally good here. You’d be in a private suite away from the rest of the maternity unit, separate entrance etc, and given all the time you need with your baby.

I think you need some more information from the medical staff involved on what their plan would be if you did choose to continue - would your baby go to NICU (possibly at another hospital far away as it may need to be the highest level of NICU) and would they make attempts to prolong his life, or would they feel this was not appropriate? Would your baby be able to stay with you or would they spend the time they did have in an incubator, with wires and breathing assistance etc? These are things they may not have discussed with you, and understanding what you might expect may help you to make a decision.

I would also ask about how likely it is that they are mistaken about the severity, whether they’d be able to tell this at birth, and what the plan would then be. What sort of care might your baby need, what might you be able to expect longer term etc.

These are such painful things to think about but it may help you to make a more informed decision

There is no right way to handle this, whatever you feel is best is the right way to go.

Sending lots of love to you

They had Trisomy 13. My little one lived for only a few hours but they are the most precious few hours of my life. You can choose hospice/ palliative care for your little one - ask your hospital about this or Google perinatal hospice. So sorry OP.

Oh OP I'm so sorry. We were given a temrinal diagnosis and made the decision not to continue with the pregnancy, ours though was differed in that baby was given only a 3% chance of surviving to birth, and if that happened babies with the condition do not usually live 1 hour past birth, we have a 3 year old son and couldn't put him through seeing me growing a baby and not having his sibling in the end. it was the hardest decision we've ever had to make, but, almost 1 year later am now 23 weeks with what so far appears to be a healthy baby and DS is so excited - it cements for me that we made the right decision at the time.

Op, I’m so sorry you’re going through this. A friend of mine experienced something similar. She had the choice to terminate after the anomaly scan or see things through to the end. She was in a state of denial and saw it through hoping that the doctors were wrong. Unfortunately this wasn’t the case and her baby passed away just a few hours old. She has no regrets, she’s glad she saw her baby and held him and has photographs as memories. She feels some closure as she feared she’d think “what if” had she terminated.

I wish you all the best OP, take your time and take care of yourself.

Sending lots of love

I’m so sorry you’re going through this heartbreak. Although I’ve not been through anything close myself I have 2 friends and one friend of a friend that have all had problems found at their 20 weeks scan.
The first friend decided to terminate. Her little boy was born sleeping and they spent a few days in hospital with him.
My other friend continued their pregnancy and when their daughter was born took her to anywhere and everywhere and took photos of her ‘firsts’ an incredibly brave decision and they were fortunate enough to have 10 precious days with their daughter before she died.
The third was a friend of a friend - I don’t know lots of details and can’t remember what came up at the scan (I think the baby’s brain hasn’t formed properly) but she was told the baby wouldnt survive and was offered a termination. She decided to carry on with her pregnancy, in denial and was extremely ill with thoughts that anything she did would harm her baby even more. She went on to have a healthy baby girl who is now 4.

Take care of yourself and so what’s right for you. Xx

@greenemerald

I'm sorry to hear you're going through a difficult time too. I really hope your baby will be okay. What's the plan moving forward for you? Are you going to have more scans etc? See your pregnancy through?

I really hope they will. I need to ask way more questions just need to figure out who to ask, as we have been to three different hospitals now (the latest and most specialist one over two hours away) 🤦🏻‍♀️😔

Sending love x

@greenemerald

I'm sorry to hear you're going through a difficult time too. I really hope your baby will be okay. What's the plan moving forward for you? Are you going to have more scans etc? See your pregnancy through?

I really hope they will. I need to ask way more questions just need to figure out who to ask, as we have been to three different hospitals now (the latest and most specialist one over two hours away) 🤦🏻‍♀️😔

Sending love x

Yep, the plan is just more regular scans and I have to alert them right away if I'm feeling unwell as she's also noted placental insufficiency.
The plan is to see her next week to confirm the babies heart blood flow and then just see from there. She mentioned referring us to a more specialist hospital if needed after next week.
We refused the Amnio because regardless of diagnosis we'd want to continue the pregnancy through. But that's just what feels right for us. No one can truly advise you, except give their experiences and it'll be so difficult for you either way :(.
Yes, ask as many questions as you need to! It can be so daunting being given this type of news, and I felt like I just took their word for it at the appointment, but later kicked myself for not asking more!
Really glad to read you have a supportive network of family and friends around you.

@PixieDustt same here! My partner more so his decision has already been made he wants to see it through. So I guess it's up to me now. I'm 23 + 4 weeks pg.

Thanks for your post 💖💙

@SinkGirl I just want to say thank you so much for your post! These are questions neither of us would have thought of! Thank you so much. Not many people would know all of this. I'm definitely going to write all this down and hopefully meet someone to talk about this! I've also requested a call to find out about the "termination" process. Just so we know. A very difficult conversation I'm sure!

But again thank you so much! 🙏💙

You are more than welcome. The professionals really should guide you through all this sensitively and offer as much or as little information as you want. Personally I would want to know as much as possible about what I could expect from each route but others would feel differently.

Most trusts also have bereavement / baby loss midwives (called different things in different places) - whichever route you choose, you should be put in touch with them and they are often a vital source of support and information.

Do have a look for local and national charities too who may be able to offer counselling and other support, local support groups etc depending on what you feel you want / need. The support you need will probably change throughout the process and afterwards, so it’s good to know what’s available. Also, even if you’re not religious, hospital chaplaincy services are often a great source of support to parents in this situation just as a source of support.

Sending you lots of hugs and