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

@1DoesNotSimplyWalkIntoMordor how do I PM you?

Hi,
You are so brave to be writing about all of this and telling your story. It sounds like you have had such a difficult experience.
I just wanted to say that whilst I definitely don't understand what you're going through, I can completely understand why you chose to terminate.
My son was born with a CHD, one which wasn't picked up in any of our scans. Thankfully, it was a defect which could be fixed. However, we had to endure months of watching him suffer as we waited for his surgery. We then had to have the entire procedure described to us over and over again and were made to sign a waiver saying we wouldn't sue if our son died on the operating table. Handing over my baby to the anaesthetist to be put to sleep was the hardest thing I've ever had to do, and we then had to wait 6 long hours to hear whether or not he had survived.
He did go on to make a full recovery, but I can tell you it was the most difficult thing I've had to endure. If I had been faced with doing the same thing over and over, watching my son suffer like that, for such a slim chance of survival, I can honestly say that I would have chosen to terminate, too.

Talk to someone about your chances of conceiving another baby with CHD. We were told that as a couple we had higher odds of having a baby with a heart defect, but that because we'd already had one sick baby, the next ones were less likely to be. (I don't pretend to fully understand statistics so I probably haven't explained that very well).
We did go on to have a second, healthy baby.

Sending lots of love to you, you sound like a really strong person.

@AlviesMam click on the 3 blue dots at the bottom right hand corner of this post then click on pm, you should then be able to compose a message.

I’m so sorry you’ve gone through this. I don’t have any advice but to try not to spend too long looking at HLHS as you will see children out their thriving and make you worry you did the wrong thing. You said it was the worst they had seen for a long while. I do know children with the condition (possibly milder versions than your baby) and the amount of time spent in intensive care in the first few years was incredible and although the children I know survived, there’s always the next big surgery on the horizon. These children all probably had less severe versions of your baby and yet go through so much. From what you said you based your decision purely on the suffering he would of experienced, that’s an utterly selfless thing to do to put his quality of life over your desire to have your much loved baby

Alviesmom My deepest sympathies to you and your husband. My cousin's wife had a first pregnancy with a devastating antenatal diagnosis of ancephaly (only part of brain that developed was the stem and neither cerebellum was present.) They went on to have more healthy babies.

CHD is actually one of the most common birth anomalies, mainly because there are a number of different types.

HLHS cannot be cured and treatment for it is regarded as palliative.

@AlviesMam I've sent you a couple of messages.

I hope you are ok.

I work as a nanny. One of my previous employers had the same heartbreaking situation. She said went on to have a perfectly healthy baby.

Sorry for you loss,

We have had a healthy baby after losing a child to chd (not hlhs but similar prognosis). The subsequent pregnancy was not easy but we had an early fetal cardiology scan at about 15weeks which gave a good indication that everything was ok and follow up scans. There is an increased risk of another heart defect with subsequent pregnancies but overall the risk is still low.

Take your time before deciding what to do

I think because i only lost Alvie Saturday everything is raw and I'm now beginning the wait of returning to normality and waiting for the results. Thank you for all your replies and advice it's getting me through each day. I'm a worrier anyway and can't help thinking it's going to happen again but need to concentrate on training my mind to positive thoughts xxx

My baby died at 26 weeks and I had to go through labour and birth knowing that I would have nothing for it. I had early onset preeclampsia which blindsided the doctors. I was devastated but got pregnant again and gave birth to my son a year later. This pregnancy was scary but the hospital took extra care of me and I was started 8 weeks early because my blood pressure was getting out of control. My son is now a healthy 14 year old. It was definitely worth it. I can now talk about my baby, her name was Harriet, without any problems. She would have been massively brain damaged, had she lived as the preeclampsia had made the placenta too small.

Oh, OP. I'm so sorry for the loss of Alvie. Please make sure to take care of yourself. I can't imagine how difficult this time must be

OP what a devastating experience you are living through right now. We also found out terrible news at our 20 week scan and I'm in hospital now having had to give birth with nothing at then end to show for it. You must still be in shock. I understand your feelings of 'why me?' ' what did I do?' But you may never know and in time I hope we can both accept that.

Take heart in the positive outcomes from posters on the thread.

@avocadoincident omg I'm so sorry to here this :( I know exactly what your going through, please take care and be strong, thank you for sharing your experience , it's nice not to feel alone xxxxxxx

@AmberAndAlexsMum so sorry to here this how devastating for you :( thank you for sharing this. Xxxxx

I'm so sorry OP that is heartbreaking

Reading this brought a tear to my eye because you possible made one of the best decisions a mother could have ever made for her child. I have HLHS myself, i am now 18 years old....but getting to this age was a real struggle for me, i went through a lot of pain, operations (Norwood operation) and trauma as a baby and as a young child. I can not thank my doctors enough for everything they do, I want everyone to see and everyone to know how brave you are! It must have been so hard for you to make that decision, but i promise you if you ever have fears again, technology has come so far! I also don't blame my parents for thinking of getting rid of me as it's a horrible thing to think about, your baby knowing it will face many challenges for the rest of their life, but whatever choice you make it will always be the right one!

The chances of you having another HLHS baby will be very slim, i have HLHS myself and am expecting a baby next year, condisering I have heart complications myself I thought my baby would have HLHS too, but my baby's heart is happy and healthy :) i wish you all the best, know you have lots of support and people who understand around you.

Best wishes x

I have been through this and feel your pain. I went on to have three healthy babies and I can assure you that you will be very well looked after in your next pregnancies. I went to Guys & St Thomas for fetal heart scanning for my other children and they saw paediatric cardiologists at 6 week check. You will have consultant care and lots of checks. Until then take time to grieve for your baby and give your body time to recover. Wishing you all the best.

@Yolo2001
Oh my goodness, I feel so awful for you having to read my post :( I'm so sorry if I have offended you in anyway. My baby Alvie had the severe case of HLHS and he probably wouldn't have survived in the womb he had 10% chance of survival this is why I made the decision, I didn't want him to grow any bigger for him to feel any type of pain :(
What a brave woman you are battling this heart condition, I bet you parents are so proud of how far you have gotten! And congratulations on your baby news! That's amazing he/she don't have HLHS! I wish you all the luck in the world!

@KatieB55 thank you for your comment! I'm glad to hear your babies didn't have HLHS it gives me hope! I opted for genetic testing and received positive results that it wasn't our genetics or chromosomes! So I feel positive to start trying again :)

Thank you for taking the time to comment on my post. Hearing stories and speaking with other mum netters have really gotten me through these awful 8 weeks!!! ❤️❤️❤️

I have a child with HRHS and Pulmonary Atresia, whilst still critical it has a much higher survival rate than HLHS. I am now heavily pregnant with my second who from scans so far has a perfectly heart. I hope this gives you some hope for the future.

@Ekefox thankyou ❤️

Just an update on this post - I now have a nearly one year old (little girl) after losing my unborn son to severe HLHS. Mums net was my life saviour through my terrible time and still is today! Thank you all

What a really lovely update Alvie's Mam. Thanks for sharing.

I’m so glad to read this lovely update, congratulations!

Congratulations Alvie's mam!