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 😢😢

Oh, I forgot to add, do ask whether the hospital where you plan to give birth has a bereavement suite or similar, and ask if it would be possible to see it. They will usually say yes unless they are currently in use, in which case they should be able to show you another time. Sometimes this is helpful to visualise what you can expect.

At my local maternity unit there are two beautiful suites, as I mentioned they’re away from the main unit with a separate entrance so you don’t have to see families, babies etc, plus there’s soundproofing so you don’t hear any sounds from antenatal or postnatal.

Both suites have specialist cool cots which allow you to keep your baby with you once they have passed away for a considerable time. They have photographers who will come in to take professional photos, staff can take hand and foot casts etc. Of course all of this is up to the parents but it’s good to know what facilities would be available to you.

I’m sorry that you even have to think about all of this and I hope it’s not too upsetting for me to mention it. I had no idea there were facilities like this until I started working with mums in the maternity service. I know lots of parents who’ve been through this process have found a lot of comfort in these facilities so thought I should mention it.

You're welcome.
I hope you get your questions answered x

Hi,

I've been where you are now so thought I'd tell you what happened with us.

Our baby was diagnosed with a lethal skeletal dysplasia just after the 12 week scan. The NT measurement was high at the 12 week scan and I then had a cvs and a series of scans to determine what was wrong. The cvs came back clear but I was told this is relatively common as they need to know the genes that have caused the condition in order to test for it and often they don't know what genes cause the condition so can't diagnose it. So we had to make our decision based on the advise of the consultants. They advised to terminate.

We already had a daughter who was 2/3 ish at the time and capable of understanding that I was pregnant etc. This was a major factor in our decision as I didn't want her to experience the loss of her sibling. In addition I felt I couldn't carry a baby knowing that they would die either in labour or shortly afterwards. It was the hardest decision of our lives.

We took advise from arc which I see you've done. We are in London so were scanned at the fetal medicine centre and I felt confident that the diagnosis was correct. I did though worry at times that we would end the pregnancy and then find out that a mistake had been made.

After our baby was delivered we were able to spend some time with her (she had already passed) and to hold her and name her. This was very important for me.

We've since had another baby but in my mind and in my husbands mind we have 3 children. The baby we lost is a huge part of who we are and our family despite not being here with us.

We had chromosome testing after we lost our daughter and were both clear so it was just one of those awful random things. The post-mortem confirmed that she did have a lethal skeletal dysplasia so this took away that element of fear of whether we'd done the right thing.

I can't tell you what to do. I feel we made the decision that was right for us and our family but I've found it so hard and I grieved for a long time.

Please message me if you would like to, these things are thankfully rare so it can be hard to find someone else who's been through it x

Op just wanted to say I'm so sorry to hear this and offer a hand to hold. I've previously mc at 16 weeks so different to your situation so can't offer advice but I think I would be inclined to give baby a chance and hope for the best but as pp has said no decision will be wrong it's what's best for you and your partner. Good luck and sending my best wishes xx

@SinkGirl again thank you so much! 🙏

@WelshMammy123 hi and thanks for your post! I can't believe you went through this same thing! I'm so sorry for your loss😔💔 it is incredibly rare I can't seem to find many stories like it! That's what's so hard for us to comprehend! You never think something this rare would ever happen to you! To be told it's like being "struck by Lightning"! We are absolutely in shock ! I really hope that whatever happens it is just a freak accident whilst baby was cooking and nothing to do with me or DP 🙏

The last few days, DP and I have spoken about riding it through to the end (but I completely understand your circumstance of TfMR). Was the kind of lethal dysplasia your little one had linked to their chest too? Were their long bones short?

I will DM you for sure but not sure how to do that via mumsnet app?! Any ideas?

Thanks again for your post 💖💙🙏

@Jesskir89 thank you for your post and thoughts! That's what DP and I are thinking about at the moment! I guess for the next few weeks our minds will flick between both options! I think it's clear we need to speak to a professional and highlight the effects of both options then hopefully we can reach the right decision for us 💔

Thank you again 💖💙

I am so sorry you are going through this. I would make an appointment to speak the bereavement midwife - most Trusts have them. They will be able to talk you through what will happen either way - if you continue the pregnancy or have a TFMR, and about the time you get to spend with your baby when they are here. In our trust we also offer for you to come and view the place where you will give birth and spend time with your baby afterwards, which you might find helpful?

I've looked after a couple of babies with similar problems in NICU.
WARNING: I'm going to be quite blunt here, so don't read it if you don't want to. It's difficult reading but I didn't want to leave the post without giving you the option to hear it.

The chest size is the biggest problem. I'm sure they've explained but inutero the baby relies on the placenta for oxygen, but as soon as they are born the lungs have to expand well enough to get oxygen to the heart and brain.
If the chest space is too small, the lungs can't develop and are unfortunately unable to work at birth. In that scenario, the neonatal team try and resuscitate at birth for 20-40minutes, trying to expand the lungs by intubating and possibly chest compressions, and then would explain that they can't survive. This would be a big team of doctors and nurses, it will look very dramatic like on ER and its scary. They would take the tubes and wires away, wrap babu in a blanket and give them to you for cuddles for as long as you wanted. We always offer photos and memory making.

Next scenario is that baby can survive initially but needs to go to ICU on the ventilator. They will do chest xrays and monitor how well his body can cope with reduced lung size. This can go either way. They could cope for a day or two or even weeks or months, but eventually it's accepted that the baby will never be able to manage by himself.

Next is that the baby needs short term support but can breathe for him or herself. They will have long term follow up by a specialist paediatric respiratory team. They still may have longer term problems, such as needing to go to hospital for chest problems with a cold.

Then theres always the babies that can cope better than anyone expects. They are rare little miracles but its not unheard of.

This is all just the lungs side.
If baby has long bone and rib shortening, its possible they have a problem with the growth plates at the ends of the bones, therefore they will never grow past a certain (very small) size. My last patient with this survived for a couple of months, didn't ever grow and eventually sadly died of a chest infection.

Nobody can tell you what is right for you. Either way this is going to be hard and I am so sorry this is happening.
Thinking of you xx

@OhSoOuting hi thank you for posting! I will definitely ask about this for sure! We wouldn't have known about this either! You're all so kind offering your support thank you! I'm a little gutted I spoke to my MW and she didn't mention this option to me... it's worrying as not many people would think to ask. We have pretty much been told baby won't survive what do you want to do? It baffles me that they haven't made both routes clear! I definitely have 100s of questions to ask! 💙

@SweetpeaOrMarigold hi and thanks for posting ! That was very hard to read but so informative, so thank you! That's the scary thing is not knowing which is going to happen for our baby boy. The last thing we want is for him to suffer for a long time. It's so so hard 😔😔 to be told by the latest drs that the chest is "severely small" does indicate he problem may not last very long😔 we are so lost on what to do 😢 I fear TFMR incase they find out he was okay in the end. Our worst nightmare !!!!

Thank you for your comment 💙

Do you want to PM me what trust you are under and I can try and check the details for you?

@OhSoOuting thank you! How do I PM using the app? X

I’m not sure tbh. It’s top right corner on the mobile site?

@MNHQ troll comment needs to go asap

Have reported that post to @MNHQ

So sorry OP it sounds absolutely awful.

I do understand your dilemma but if it was me, I would 100% terminate the pregnancy. There isn't really a positive outcome, I think seeing it to the end will only increase the heartache and suffering. Sorry to be blunt but it would be quite back and white for me.

Good luck op.

I agree with @OhSoOuting about the bereavement team, ours is amazing. Also most childrens hospices offer excellent support services into the future, including counselling for siblings and grandparents. They also offer rooms (in our local ones) you can go and be with your baby, if the worst was to happen, either during or after. The bereavement team would introduce you to the hospice team. We have them come and speak to the families of all our poorly babies, just as a person to speak to that isnt directly doing the medical care.

I am so sorry you are going through this OP.

It must be so hard trying to work out what's best for you. 💐💐

I'm so sorry you're having to deal with this OP, it must be so hard.

A friend of mine had a very similar problem. She felt strongly that she didn't want her baby to be born only to suffocate because he couldn't breathe, and to have a load of strangers round him desperately putting tubes down him and compressing his chest etc. She felt the kindest thing she could do was to let him pass away peacefully via a termination, and she has never regretted it for one moment. She was able to say goodbye, he is still very much her child, and she doesn't have to cope with the memory of him going through hell in a fruitless effort to keep him alive for a few hours or minutes longer.

I really feel for you, one of my friends had a baby that was incompatible with life but she decided to go to full term, J was born and died almost straight away. Due to problems in the birth she had to have a c section. She went on to have 2 healthy babies both by c section. If given the options she wanted more children but was advised against it because of her scar tissue.

Hi OP. I'm so sorry for the situation you, your partner and baby are in. I don't have personal experience but I can tell you about a friend.

Things were picked up at her 12 week scan and lots of tests were done between the 12 and 20 week scan then at the 20 week scan, they told her that her baby had severe deformities and the likelihood of survival to birth was low and survival after birth was even lower. She did a lot of research and decided to refuse a termination and carry on.

They have a 3 year old boy now. His life is by no means easy, he had to be tube fed until he was 2.5 and they have frequent hospital visits but he laughs, talks and now goes to nursery. Surgery has sorted out some of the main issues and other procedures have helped ease his condition too. I'm not sure on life expectancy, I think he is just more at risk of some complications than others but there's no firm 'he won't make it past 20' sort of thing or anything like that.

They are a family and although it's hard, they seem to take it in their stride and give their boy the best as we all would.

Wishing you all the strength in the world and whatever you decide to do will be for the best. ♥️

@MisssC3025 Hi again. Yes our baby had a bell shaped chest and shortening of the long bones. It sounds very very similar to the condition your little one seems to have.

I don't think there is any right or wrong answer on this. You can only choose the one that is the less s**t option - whichever that might be.

My DH in particular was fearful that the diagnosis would be wrong and he in fact didn't want to see our daughter after she'd arrived for that very reason. He was scared he would see her and he wouldn't be able to see that there was anything wrong.

Hope you're ok. I remember this period of time like it was yesterday. It's the most horrific of situations x

I don't have experience of this but am really sad for you.

I lost a very much loved and wanted baby when he was stillborn at 26 weeks. Scans had all been normal but he had a few abnormalities when he was delivered that hadn't been detected, and time has given me the ability to see that something really was wrong else he would have lived.

The only thing I'd say about it was that it was "easier" (if that's the right word) physically to deliver a 26 week baby than a full term one. Getting into labour was horrific and the labour wasn't at all easy mentally, but I delivered him very quickly when the time came.

The unit where I delivered were amazing, did everything at our pace, and the morning we spent with our baby is nothing but a positive memory now the pain is less raw.

Take your time, do what feels right for you. I'm so so sorry