Rare and very serious heart condition

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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?

Thanks for your messages of support. I had our precious boy Jacob on Friday morning. The labour was quite short but extremely upsetting. We did see him before we left hospital and had a short blessing for him. We met with the funeral director yesterday which knocked me for six having to think of the service etc. I wasn't expecting it to be a proper service I'm not sure why but it has made things even more upsetting. All I can think of at the minute is how much I miss him and miss being pregnant and wanting to be pregnant again. My little boy initially took it well but he does seem a little clingy and upset and has told his teacher about it at nursery. I keep wondering if I will ever find a way out of the sadness x

So many hugs. We had to induce our baby early (too early for survival) several months ago. It is important to let yourself and close family grieve. Jacob will always be your little boy. He was much wanted and loved, as our baby was. I am so glad you were able to hold him. Remembering our daughter's kicks in utero and holding her once she was born has given us so much strength over the following months. It is ok to remember the joy of that while also feeling wretched loss and sadness. Grief isn't uniform. Take care

square blue I'm so so sorry that you've both gone through this. Sending you both hugs

Oh square i am so sorry.

How are you doing?

My pfb was diagnosed with pffd at our 20 week scan. They thought he would be ok and i was monitored closely but sadly he died at 24 weeks but not discovered until a growth scan at 27 weeks. I was induced two days later and Lucas was born in July last year.

If you want to talk about anything please do.

I remember how overwhelming the funeral was, have you had any thoughts about it?

I can share what we did and what i wish i had done if that would help at all?

Such a difficult time, im so sorry xx

I think that might help if you could share what you did / thoughts about the funeral if that's OK? X

For the funeral we contacted a local directors who were brilliant, understanding. They knew how to arrange things and were flexible with the things we wanted. It surprised us how strongly we found we felt about some things. We had to wait a few weeks after the birth because I had to go back for surgery due to a retained placenta followed by a haemorrhage after which I was quite ill. We also had to wait for the pm to be completed.

We arranged through the funeral directors for our daughter to be cremated. We ordered a wicker coffin through funeral directors (via www.wickerwillowcoffins.co.uk/) because it felt right for her to be in a basket, as she was at the hospital straight after being born. I arranged some flowers from our garden into an oasis to go on top of the coffin and kept a photograph of them. I gave the funeral directors some fabric from the bottom of my wedding dress to wrap our daughter in. My husband and I decided that it would just be the two of us for the funeral so that we didn't have to 'cope' and could be as we felt we were, without worrying about others. Some people we have spoken to since found that it helped them to have family there - it is a very personal thing. The funeral directors were fine to let us do our own thing in the crematorium chapel for 30 mins. We did not have a priest or officiant. We chose three pieces of music which were personal to us. We had told the funeral directors which track to play when, and for the last one when we wanted the curtains to be pulled. It felt almost physically painful at that moment but my husband and I faced it together. I wrote our daughter a letter which I read out. That was cremated along with her. We also spoke to her and read the Gaelic blessing. After the cremation we went to the church where we had been married for a short while. then, as it had been an early morning funeral, we went home, had a light lunch and went to bed for a long nap as we were so exhausted.

There is no one right way to do it. My advice would be not to rush because you feel you should or feel that you need to instantly arrange a date, talk it through with your other half and speak to funeral directors until you feel comfortable with them. We found the sands website helpful for reading stories from other families who had lost babies early. I also found mumsnet helpful; there were others who had lived through something similar. By reading their stories I felt less alone.

In time I have found it has helped to have ACT therapy (somethings called third wave cbt) but straight after the birth I would not have been ready.

Hugs again.

Hi Square
Just wanted to say that I am thinking of you and sending love and support. It sounds like you are being incredibly brave. It is such a sad, hard time. I am 5 weeks on now from our tfmr. I wanted to reassure you that whilst the grief and sense of loss can still hit me in waves, it is getting a little easier each day. I remember in the first couple of weeks wondering how I could ever get through it. To this day I don't know how but somehow I did. Be very kind and gentle to yourself, someone told me to treat myself like my best friend if they had gone through this experience. I found peace in retreating into my home, seeing very few people and doing things that would create a memory of Lily for me and her sisters. We planted a rose for her in the garden between roses we had planted for her older sisters and everyday we think of her there. I had a pendant made with an engraving of her footprints that I wear close to my heart and it makes me feel connected with her still. We did not opt for a funeral, we let the hospital do it. I do regret that a little but at the time was too overwhelmed to handle thinking about it. I am sure however you choose to honour Jacob will be beautiful and right for you. As for your four year old, I found I had to explain what had happened in very simple but definite language to my four and two year olds. They were very sad but more rattled by seeing my grief than by the loss of the baby as it was very abstract for them. I found the main thing was to reassure them that my sadness was not because of them. They are fine now and I am sure your little boy will be too.
Lots of love xxxx

Well we had just buried MIL a week before Lucas was born so we contacted the same funeral directors. They collected Lucas from the hospital and kept him with them. We were allowed to go in and see him / sit with him if we wanted but we didn't.

At the time i remember feeling like i might want to go in and read him a story but i wasn't strong enough. I don't regret not doing that now but maybe it would have been nice?

We did take some things to the funeral directors to go in his casket with him including two teddies we had and a crusifix from dfil. He already had a blanket with him in the hospital and that stayed with him too.

We opted for a graveside ceremony. I chose to have helium balloons instead of flowers. When Lucas arrived in the hurst there was a wreath with him. I liked it more than i thought i would tbh.

I only invited close family. Parents and siblings. I wish i had invited my close friends. My friends were supportive at the time but it wasn't until months later when i took one to the grave that i think she really realised what i had been through.

We didn't do anything afterwards, in fact we went away on holiday if you could call it that, i wish we had done more to mark it. Maybe a meal?

The worst thing about it all for me is i opted to have him buried with MIL and i really wish i hadn't. In our cemetery there is a designated area for babys. There graves are decorated lovely, something i would like to have done for Lucas. By the time we got a headstone on there is no room to do that. I always wonder how comfortable i would feel going there if anything were to happen with DP and I we have had rough times since it happened.

So i guess be completely sure of what you do and don't want. Consider having friends there who have been on this journey with you and don't feel like you can't or shouldn't mark it as you definitely should.

We had to wait almost three weeks to bury Lucas as Dfil was on holiday. In the meantime i made a lovely wooden train with his name on and took great pleasure in being able to do something for him. We used it as a kind of grave marker. Something to think about?

I don't know how you feel about having things on the grave, they are quite hard to find tasteful things. If i can help you out with anything like that, let me know.

I just thought i would add our sons funeral was free. Apparently a lot of funeral directors do not charge for baby funerals so that is something to be aware of.

The other thing, if you would like a headstone, i know it takes so long for the ground to settle but we waited about 12 weeks for the headstone so i would possibly order it earlier rather than later.

Thanks so much ladies for the positive thoughts and ideas for the funeral. It's helping immensely xx

No worries square hope you are doing ok.

Gosh nothing but loads and loads of

Thinking of you square.

I'm afraid I can't help much with the funeral side. We chose for the hospital to do both dd2 and ds's services. I had a little input into the readings etc and chose flowers but I wasn't strong enough to think much at the time. I don't regret it at all.

We had both cremated and they are together in the childrens garden, we were very lucky to get ashes back from ds as he was only 14 weeks. The lady who did the scattering service cried, she'd never done 2 services for siblings (just over a year apart too)

We have a plaque for dd2 in the sands garden and have just ordered ds's which hopefully will be ready to go next to his sisters fairly soon.

I spent a fair amount of time there tbh, it's nice to have somewhere to go and think of them. We will start taking dd1 soon too

Our daughter was cremated. They didn't charge. We had a wooden casket made and painted cream for her and we asked our funeral directors to affix the bunting from her room around it. Decorating the casket made it more personal to her and somehow less somber. We invited our family and our close friends and her teacher... People who we felt had loved our daughter in life and who she had loved too. The service was incredibly emotional as I'm sure you are preparing yourself for. One thing I am really pleased we did was to get up to speak about our daughter. It was tough and I did break down a little at one point but I wanted to give her the most personal and loving possible service and I knew that for us, it felt right. That being said please just follow your own gut instinct. We also asked people to donate to the critical care unit where our little girl was treated rather than buy flowers... I wanted to to try and help other poorly children and their families. The fund is now 13 months old and we've raised over £25000 meaning the unit has been able to order a specialist critical care bed for the ward which will have our daughters name inscribed on it. A lasting tribute to a little girl who lived to make others happy... I mention the fundraising because it gave us such a positive thing to work towards during the darkest days of our lives.'

Take care of yourselves, be kind to each other. You have my utmost sympathies