Rare and very serious heart condition

(40 Posts)
square53 Fri 22-Apr-16 17:29:47

I attended a growth scan on Monday (as I had a low pappa result). I'm 27 weeks pregnant. We were told that our baby had a heart problem and went for an echo scan yesterday at fetal medicine. We were given the devastating news that our baby has an extremely rare condition which is an aneurysm in the right ventricle of the heart. Due to the rarity there is no obvious surgical option but they have said we would have to wait until he is born and then try medication and then possibly look at a heart transplant. He is at very serious risk of heart failure/cardiac arrest/sudden death. We have been told to consider termination. This is so scary and upsetting at this late stage but we have to think of the long term and the impact on his 4 year old brother. Has anyone experienced something similar or had a termination at this late stage?

OP’s posts: |
sofato5miles Fri 22-Apr-16 17:42:16

I apologise as I don't have a similar extreme experience but didn't want to read and run. What a horrendous shock for you and so devastating. You will make the best decision for you and your family under these awful circumstances. Strength and love.

scotsgirl64 Fri 22-Apr-16 17:48:57

I am so sorry you have been given this devastating news ...there's not an awful lot I can say to make it any better...
you could wait until baby is born and see if condition is as bad as ultrasound suggests, but there are no guarantees it would be any better- could you get a 2nd opinion to clarify situation?.
even if baby were to survive birth(if you decide to continue with pregnancy) , he would be critically ill and given the description of his condition it seems unlikely he would live long (and would be in hospital of all this time)
I'm afraid heart transplant are very rare in young babies....
I hope you get some answers and are able to talk to health professionals again very soon xx

scotsgirl64 Fri 22-Apr-16 17:55:43

I am so sorry you have been given such devastating news....I cannot imagine how you must be feeling but hope you can be guided by the health professionals and their experience
If your little boy survives the rest of the pregnancy you will face a very tough time ahead with no guarantees of success....heart transplants in young babies are very rare and you may face months in hospital waiting for a donor
big hugs xx

LaMiaGirasole Fri 22-Apr-16 18:00:56

Was your scan done at a specialist cardiac centre? This is a difficult diagnosis but it is rare to be offered such a bleak outlook at this late stage of pregnancy (I'm not a health care professional but have a lot of experience with complex congenital heart disease). My DS2 has a very complicated heart & we were told before his birth that he had no chance of survival or surgery. He's nearly 20 now & hoping to go to university. At the time DS1 was nearly 3. Please pm me if you think I can be of any help. I can signpost you to a number of places for support, whatever you think you might choose, if you think that might be helpful. Take care flowers

square53 Fri 22-Apr-16 18:31:30

Thanks for your supportive messages. The scan was done by a specialist cardiac consultant. We are going again on Tuesday to also speak with a cardiologist from another hospital but we aren't holding out much hope. It has been a huge shock as everything was fine at 20 weeks scan. There is a chance things will worsen whilst he is still in the womb. It feels such a risk to wait and see how he copes after birth but also such a huge and devastating decision to not continue with the pregnancy especially as I feel him kicking in there all day long 😢

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sofato5miles Sat 23-Apr-16 09:17:18

There is absolutely no easy solution and a time pressure. The worst combination. Have you looked at ARC? They helped me with a 1:2 triple test result and while we waisted for CVS results.

You have a very sad journey ahead and my heart goes out to you.


square53 Sat 23-Apr-16 09:37:41

I have sent an email to ARC so hope to hear back on Monday. It feels like nothing will help at the moment but willing to try anything

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sofato5miles Sat 23-Apr-16 11:20:11

It feels like nothing will help as it sounds like a desperate hell, I'm sure, but there are people to help love and support you in this darkest of times.

I only know the fear of having to terminate a much loved and wanted child. I cannot even begin to understand the pain you are going through now. flowers

Mishaps Sat 23-Apr-16 11:22:54

So sorry that life has thrown this dreadful problem at you and your family. flowers

movingforwardagain Sat 23-Apr-16 12:57:29

Hi square. I know all about the pain and devastation of discovering a serious and rare CHD at that stage in pregnancy - your fear about how things will progress, combined with the hope with each kick you feel. The decision you now face is torturous. We didn't have another child to consider and so I can't put myself in your shoes. However I'd be happy to share my experiences of what life was like in hospital in NICU and then being transferred to specialist care if you would benefit from this? Our DS was offered a surgical route (I know this doesn't seem an option in your case) at a few days old but sadly didn't recover from this. Wishing you strength.

square53 Sat 23-Apr-16 13:14:02

If you wouldn't mind sharing with me that would be great. I think before we make up our mind then it helps to think about all aspects

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movingforwardagain Sat 23-Apr-16 13:26:40

I shall PM you with this then.

needanewjob Tue 26-Apr-16 20:41:03

I also didn't want to read and run. We lost our very precious daughter aged 7 to a brain aneurysm caused by a very rare congenital problem called an arteriovenousmalformation. We were unaware that she had this issue as she showed no indications until the day she passed away. I've since found support groups where I can speak to other parents affected by this rare condition. Finding and speaking with others who have similar experiences has helped me enormously - if you can find a group even if it's just to find out more information I would encourage you to do so. Sorry if I sound like I'm interfering but I know how mind blowing it can be to be presented with a rare condition and to suddenly have to become an expert in it.

square53 Tue 26-Apr-16 21:04:49

Sadly we were given more sad news today that he was not likely to make it to the end of the pregnancy or to survive birth as his heart was so weak. We began the termination process today by having the injection and then I go into hospital on Thursday to have labour induced. Devastated but I know it's the right choice for him and for us

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needanewjob Tue 26-Apr-16 21:09:11

square53 I am so so incredibly sorry. Life is unbelievably unfair at times. There's nothing I could say that will make this better but I am thinking of you x

guineapig1 Tue 26-Apr-16 21:17:54

Another one thinking of you and your family here too OP xx

daisydalrymple Tue 26-Apr-16 21:28:22

Oh I'm so sorry to read this and wish you and your family much love and comfort over the coming weeks and months. X

MadameCholetsDirtySecret Tue 26-Apr-16 21:32:10

I'm so sorry. What a devastating outcome for you all flowers

KittyandTeal Wed 27-Apr-16 13:07:13

Square I'm so sorry to hear your terrible news 💐

I have been through a post 20 week tfmr (I say post because I think the injection adds another traumatic element, although I understand why it is done)

I am here for you if you ever want a chat. Sands are brilliant, as are arc.

I don't know if this is your first baby but I am happy to talk to you about the labour and after if you would like to talk to someone who has been there.

sofato5miles Wed 27-Apr-16 13:34:21

Oh square! So sorry to hear this. What an hoffic trauma for you. I hope you get as much support as possible.

square53 Wed 27-Apr-16 13:44:48

Thanks so much for the messages of support. I have experienced labour before. I am not sure if it makes this easier or more frightening but I am dreading tomorrow

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bayswatersophie Wed 27-Apr-16 14:52:41

So so sorry to read this. I know a little of what you are going through as I went through a tfmr at 21 weeks via induced labour just under a month ago. It is such a hard thing to do and such a tough decision to be faced with. I will be thinking of you tomorrow and hope it goes as peacefully for you as possible. My experience, and everyone's is different of course, was that the point you are at now was the hardest. Once the physical part was out of the way, I felt more able to grieve for my baby and find some peace. I found ARC very helpful as they have a forum for women who have gone through this and it helps to share the sadness with those who understand. Like Kitty said, if you want to chat or hear first hand what to expect of this type of labour, feel free to contact me. Physically it was very different for me from the births of my other two girls - physically easier in some ways but harder in others as of course emotionally it was difficult. I will be with you in spirit tomorrow and am so sorry that you find yourself in this hard place. Sending lots of love xxxxx

KittyandTeal Wed 27-Apr-16 16:52:41

Square it won't be quite as painful/long as typical labour. I had g&a and morphine on a cannula but then I have a pretty low pain threshold.

Have you decided to name and see your baby?

zen1980 Sun 01-May-16 08:47:07

Square I didn't want to read and run and wanted to say will be thinking of you. I had a tfmr at 24 wks for a different condition however for the same reason the baby wouldn't properly survive the pregnancy or birth. Our little girl was also just over 3 at the time. This was probably on par with the hardest thing of dealing with explaining to her the baby was too sick to come to us. We must have done a good job of explaining it at the time an dealing with it with her because she doesn't now at 6 have a negative outlook of how it happened. We visit him at the cemetery an she understands and when I get sad as she's gotten a little bit wiser she knows I loved her brother as much as her and I could not be sad. Just wanted to send you more extra strength an love and be kind to yourself xxx

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