Ending a pregnancy due to a CHD (HLHS)

[AlviesMam]

Hi. Just looking for some mother’s who have been in a similar situation. Me and my husband went to our 20 week scan feeling nervous but also excited. The whole journey has had me anxious as we had previously miscarried at 7 weeks in January. The sonographer explained everything looked as it should but couldn’t get satisfactory views of the baby’s heart. She said not to panic and to come back in a weeks time with the doctor. I started to panic and wondered why I wouldn’t be with a sonographer again, but as her words were ‘not to worry’ I tried not to overthink. We got our picture, seen his heart pumping away and his legs kicking which gave us comfort. The week didn’t drag, I kept busy with work and the day came around for the second scan. I went into the room very anxious as I always do, husband was at work so I asked my mother in law to join me as I just thought this was simply to check measurements, I wasn’t too worried. The doctor was taking ages, didn’t speak, kept frowning and tilting her head sideways, she kept listening to the heartbeat over and over. Eventually she told us there’s something wrong with the heart and that she was going to ring the baby heart doctor to come in and take a second look before she could tell us what it was. The baby heart doctor came in, did the same and they were speaking in medical terms and I was constantly hearing the word ‘critical’. He advised to ring my husband before he told me the news, all he could tell me was my baby’s heart was a severe problem. Eventually he came back, sat me and my husband down and started to draw us a diagram of a normal heart, then drew us a picture of our baby boys heart. Our baby boy was diagnosed with ‘critical hypo plastic left heart syndrome’ he explained the left side of our babys heart didn’t work at all and it was the worst case he had seen in a long time. He gave us our options but explained that our baby could die in the womb if I went full term, he also explained if our baby survived birth he might not even survive the first operation needed for HLHS. He explained this is usually a random occurrence and there is no explanation for it. We were absolutely devastated, why has this happened to us. How can I not blame myself? I hadn’t drank alcohol or caffeine, drank my 2ltrs of water per day, stayed away from foods I should have, took my vitamins, the list goes on! We had a night to think about it as I didn’t want to spend any longer on this decision. We researched all night and came to the heart breaking decision to end our pregnancy, I was 21 + 4. We wanted to stop our baby from the pain he would have went through, that’s if he did survive. Me & my husband are devastated and the Labour was the hardest thing I’ve ever had to do in my life knowing the end result wasn’t going to be the happiest moment of my life.

How did you cope with a late miscarriage?
How can I stop myself from spiralling into a depression?
How do you get through not worrying about your next pregnancy?
How do I stop worrying about my future baby having HLHS?

If anyone has similar stories or could help with my questions I would be so grateful. I feel like I’m empty, I feel like I can’t see the light at the end of this dark hole.

Thank you
Alvies Mam x

There is a tfmr board (termination for medical reasons) on babycentre that gets a lot of traffic.

It sounds as though you have already made the decision to terminate? Antenatal Results and Choices can offer you support around the decision and their website has message boards too.

If you haven’t definitely decided to terminate, Heartline Families can put you in touch with others living with HRHS / HLHS and offer you support.

OMG I’m so sorry, I’ve just read again and realised that’s your lovely boy has already died. I’m sorry if the reference to Heartline was insensitive. Kicking myself for not reading properly.

Hi Alvies Mam,
I am so sorry to hear of this sad news. It is truly heartbreaking. I have not been through this myself but my SIL did at a similar gestation due to the baby having brain damage. She did go on and have another pregnancy soon afterwards and had a healthy boy so please don't give up hope.
Have you been offered any specialist counselling from the hospital?
I would recommend going on the SANDS website as there is lots of information there and you might get some local support,
Good luck 💐

I’m so sorry @AlviesMam. I can’t offer any advice, but hugs from me.

Thank you, I have lots of support and getting counselling soon. I just needed to hear some success stories of a future pregnancy after this awful time. You never think it will happen to you. A heart defect didn’t even cross my mind, definitely not a rare critical one! I’ll never ever forget my baby boy and feel guilty thinking about my next pregnancy. Xx

So sorry to hear of your loss.

A close relative of mine had very similar experiences.

She has gone on to have healthy children.

She still grieves her lost little one in quiet moments but is generally in a happy place now.

These things do happen sometimes and it's devastating but there is a way through with time.

You have to be patient and kind to yourself and each other. You have reached out for support instead of keeping it all inside which is good. You are strong even if you don't feel it right now. You will get through this.

I'm so sorry for your loss. I had a TFMR in December and lost our gorgeous second DS.
I would recommend speaking to ARC and requesting to join their forum

@SomeonesSomeome

Thank you xxx

We had a late miscarriage due to turners syndrome. It was heartbreaking but baby was deteriorating at each scan and was unlikely to make it anyway. Labour was hard as in normal delivery unit so when we arrived could hear babies and then we were shoved in a side room and left for ages before they did anything then leaving we bumped into couple of mums leaving with brand new babies. Heartbreaking. Definitely get counselling. Sands or petals are amaze. You will get through it on your own time. And you're allowed to grieve so let yourself. Our beautiful rainbow boy is here now so keep positive. Xx

I am so sorry for what you've been through. I haven't been through this myself but my sister in law had a number of miscarriages and then had to have a late termination for medical reasons following the 20 week scan. She has gone on to have a healthy baby boy so don't give up hope....there are a lot of rainbow babies out there xxx

So sorry you're going through this and the loss of your boy. I don't have any experience but just wanted to send some love and say I'm sure people with experience here can help.

Also it probably won't help. But this is in no way your fault.

Oh Alvie’s mummy bless you. Please do not ever think that this has anything to do with something you did or didn’t do. Sending you lots of love and support. Xxxxxx

I don't have any advice but didn't want to read and not offer my sympathies. This sounds like one of those utter shitty things that just happened and is most definitely not your fault!
Massive hugs Alvies mum

Hi Alvies mam! Sorry I've no advise but im so sorry for your loss. Hope you have good support around you. Take care of yourself x

I am so very sorry for your loss.

If it is of any comfort, a friend of mine had a late termination after her baby was found not to have developed properly. She went on to have three healthy children

Hi, I’m so sorry to hear about the loss of your precious little
Boy. I lost my little girl at 41 weeks. We had all the tests and post-mortems and they can’t say why it happened. She just died. I was terrified through my further pregnancies. In my mind if it happened once with no reason then it could happen again....even though all my consultants said it was incredible unlikely to happen again. I went on to have two very straightforward pregnancies resulting in two healthy children. It was terrifying. I still mourn for my little girl but my two living children have brought happiness in to my life.
I recommend sands. They were a lifeline in the early days.
In my second and third pregnancies I was given so much support and extra scans. Scans even when I just felt I needed one. Just to calm me down.
Be gentle on yourself. It’s early days.

I haven't been through this but I didn't want to read without saying how sorry I am for the loss of your little boy. Hope you get lots of support and advice about future pregnancies. I wish you lots of comfort and peace, and space to grieve your little one. Be kind to yourselves and each other. Lots of love and good wishes.

I am so sorry to hear your awful tragic news. What an awful decision to have to make and process to follow. I cannot imagine how hard that must have been.

I’m no medic, but you didn’t cause this. You can’t blame yourself, it’s just one of life’s tragedies. I’m sure your Consultwnt will gladly confirm that this is medically correct too.

I had miultiple miscarriages. It’s not the same as you at all but I had the same nagging worry about all my pregnancies having an identical outcome. They didn’t, and I have two healthy happy daughters. Have faith.

Take time to grieve your son. It’s a bereavement like any other, I do feel that when something dies inside you it Is a grief like no other. It’s like a part of you died. I’d get some therapy to work through that very normal but intense situation.

I had a late termination due to Turners syndrome having been told similar to you - that she would have been unlikely to survive pregnancy and with each scan things were getting worse. I has also had previous miscarriages and I was utterly devastated. I'm so sorry that you are going through this, it is heartbreaking and you will need time to come to terms with it.
It will be completely natural for you to worry about the next pregnancy, even though you know that it's unlikely to happen again. It helped me to have the same consultant with my next pregnancy, and he also agreed for me to have early scans, which I found a real comfort. My next pregnancy was completely normal but, I wasn't as relaxed about it as I should have been.
My only advice is to be kind to yourself and to each other, and talk to those you feel you can talk to about it.
I'm so sorry.

You did the kindest, most selfless thing you could have done for your little boy. You spared him a lifetime of pain (however short it may have been), taking the pain on yourselves instead. Much love to you and DH, and my best wishes for the future.

I’m so sorry. You made a very brave (and in my opinion correct) decision which was entirely in Alvies’s best interests. You should be very proud of yourself. You are a wonderful mummy who put your baby first even though you knew you would be devastated. CHD like all congenital anomalies is incredibly rare and you are extremely unlikely to be in this position again but you could ask for some genetic counselling to help manage your anxiety going forward.
Alvie will always be part of your family. You will worry about your next pregnancy and baby but try to see that is not a reason to not go ahead and try so that you can one day feel the joy of taking Alvie’s little brother or sister home with you. Good luck OP.

@AlviesMam
I am so sorry

I'm sorry for your loss. Do not blame yourself for this, I've been through it and I was told umpteen times there is nothing I could have done to prevent it, my baby had HLHS, severely enlarged Aorta, severely narrowed Pulmonary Artery and another abnormality which I'm not going to name on a public forum in case it identifies me (these 4 anomalies together are very very rare). We had numerous scans over several weeks and each one left us with a worse prognosis, we chose to terminate, it was the worst decision I've ever had to make.

We were advised to wait for at least 3 months before ttc, because we needed to wait for pm results, I fell pregnant very quick after being given the all clear, had an agonizing 8 week wait for an early heart scan and thankfully everything was ok.

I'm happy to answer questions, btw there is only a slightly increased risk of it happening again.
I'm trying to remember what we told the first time we met the Paediatric Heart Surgeons (who would have operated on our baby had we chosen to continue with the pregnancy) when they were explaining how the heart forms and how HLHS occurs.

I think you made the right decision. If your son had survived for a few years after birth following surgery (which admittedly might be unlikely) he would have gained some knowledge of his condition and it would have been much harder on both of you.

I'm sorry to hear that this has happened to you.

Thank you all for your kind words and advice and stories, big hugs to you all xxx