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 😢😢

@misssc3025 hi there. I didn't want to read and run. I am so sorry you're going through this. While my situation is a little different, overall, our baby boy has also been told he has multiple defects and unlikely to survive. This all started last Tuesday at our 20 week scan and we've been broken ever since. Our boy has a hernia in his diaphragm with his bowel up in his chest, which in turn means his lungs are probably damaged because it's stopping them growing, he has a small stomach so they think he has Oesophgeal Atresia (his oesophagus isn't connect to his stomach), plus cleft lip and palate and micrognathia (small chin which can be life threatening). We had an Amnio to test for t18, t13 and Downs, and to our surprise, he actually doesn't have any of them. Though our doctor told us before he strongly thinks he has one of them. But we are still faced with the same question about termination because doctors won't operate on babies with multiple problems, if he even survives to birth. So We are still remaining realistic because each problem they think he has are life threatening on their own, let alone having them altogether!

Anyway, I just wanted to offer some support as it sounds like we both have an uphill struggle on our hands.

@2020babym oh gosh hi I'm so sorry! Isn't this just truly awful?

Thank you for posting and sharing your story. You can't help but feel so hopeless. I don't think anyone would ever know what's the best decision to make during this time. Have you felt the same as us flickering between termination or going full term?

Have you spoken to any charities or been offered counselling? I know no one will give us the answer we need but I'm toying with the idea just to see if it helps. I don't know.

My partner has been amazing but he's different to me he prefers getting up and about and doing things to occupy his mind. I, however, don't want to leave the house. On our way home from London hospital yesterday a girl I knew from school congratulated me on my pregnancy and I gave her such a cold response. It's not her fault she doesn't know, but that's what fills me with anxiety to step outside 😢

I'm here always if you need to talk or vent. Thanks for reaching out 💙💙

@MisssC3025 it really is heartbreaking, particularly when everything was going to well up to this point. We felt those lovely kicks so early on. Even now he is still so active and rolling around.

Since we had the results that he doesn't have t18, 13 or Downs, we have a lot more questions to ask about his condition and if anything can be done. A lot of the findings were suspicions etc. so nothing has been confirmed 100%. Aside from his cleft lip as this is very clear on a 3D picture. We have a follow up scan tomorrow to see if anything's got worse or stayed the same. We are trying to prepare for the worst as clinging onto hope is worse in some ways. He's a very poorly baby :( After tomorrow's scan and once we've asked all of our questions, we will talk about our choices. Have you been offered an Amnio or CVS to rule out chromosome problems?

I completely get it, my DH is the same and needs to keep his mind occupied but he's still been amazing and hasn't left my side. I also live close by to my family and they are keeping an eye. But my feelings are, while I still have him in me and feel his lovely kicks, I want to make sure I still look after myself. If that makes sense... But if you can muster it, try and go on a long walk somewhere. It doesn't sound like much but it helped clear our heads and have a proper conversation about things.

Same to you

Completely can empathise with this! Kicks are strong and he's so active it's wonderful. Every kick now is bitter sweet. It breaks my heart he has know idea what's going on. 💔😢

I am praying 🙏 for you ! Please update us on how your scan goes!

Yes I had an amnio and blood test which ruled out the most lethal skeletal disorder, but it still seems the one my baby has is very lethal too. They can't diagnose which type of skeletal disorder until baby is out of the womb and they'll do X-rays etc to find out what's caused it and whether it's to do with myself or DP 😔

You're so right! I need to get out of bed for my baby's sake. We did go on a lot of walks the last few weeks, but now we've been hit once again with the dreaded "lethal" word I'm back to hardly moving! I will get up and about today just need that burst of energy. DP is by my side he's helping me out, so I'm sure I'll be up and ready soon.

All the best for tomorrow !!! 🙏🙏🙏

@MisssC3025 oh lovely, I am so heartbroken to hear this update 💔😭 I have been thinking of you and really hoping things would turn around. What you are faced with is the most impossible decision in the world so of course you aren’t sure which way to turn. A friend of mine discovered at her 20 week scan that her son had a condition incompatible with life and she found ARC to be a life saver in deciding what to do next. I am thinking of you and sending you both and your beautiful boy all my love ❤️❤️❤️

@2020babym I’m so sorry to hear of your agonising situation too 😔😔😔 And so difficult when you’re dealing with suspicions rather than definitive results. How cruel life can be. I hope the scan tomorrow goes as well as it possibly can. Send lots of love to you both too xxx

My heart goes out to you. I am a specialist midwife and have cared for families with this type of diagnosis - those who have continued and those who did not. Please feel free to PM me if you would like to talk privately

Many people do not get given information about what is known as perinatal hospice as an option for care. You may find it useful to google the organisation of that name and look at the list of contacts.

@jmm499 hi! I know I'm so upset! It's been an awful few days for us! I hope you're well and all is going okay for you? Yes we have spoken to ARC but we are thinking to call again as this time the illness is pretty much confirmed 😔 I hope they can support us throughout this!

Thank you lovely 💖💙

@Sussexmidwife hello and thank you so much for reaching out! It's reassuring to hear from people who have supported others with this diagnosis! Thank you for making us aware of perinatal hospice too! I've had a look and can't seem to find any near our area, so I will ask about this for sure!

I'd love to PM you I really appreciate it, but I'm not sure how to do that via the MN app?

Thank you
💙💖

I’ll try messaging you
Where are you based?