20 week scan - CHDs found and playing the waiting game

[dotmckee]

I am 32, and 21 weeks pregnant with my first. It took us 16 months to conceive. We finally found out I was expecting in November. We had a minor scare at 8 weeks, but a scan at the EPU showed a heartbeat. 12 week scan went fine and initial screening results showed 1 in 100,000 risk for Downs etc. I was starting to enjoy the pregnancy and told our family, friends, work.

We had our 20 week scan this time last week. The baby was not cooperating, and they said they couldn't get a good view of the heart so asked us to come in the next day to see a specialist. They scanned the heart and said it looked asymmetric and there was a possibility of a leaky valve. They referred us to the fetal medicine unit the next day for a fetal echo.

The echo showed a smaller left ventricle and a hypoplastic aortic arch. The way they explained it is that they were not worried about the smaller ventricle at the moment, and the aortic arch could be treated by open heart surgery when they are newborns, with a relatively good prognosis but this includes future surgeries and lifelong medication etc. The surgery is a repair not a cure.

My husband and I were completely pole axed. They asked us to come in yesterday for an amniocentesis to rule out chromosomal disorders as the CHDs are linked to some chromosome disorders. The amnio happened yesterday and went fine.

But it gave us a chance to speak more to the consultant, as my google searches about smaller left ventricle led me to Hypoplastic Left Heart Syndrome, a much more serious CHD which does not have as good a prognosis, and would involve at least 3 open heart surgeries which not everyone survives, that is if the baby survives being born. He said yes, that wasnt on the report we had last week as they cant tell at the moment because the heart is too small to tell at the moment, and a lot can happen in 3 weeks. They want me to come back in for another scan on 27th March.

But while I am waiting for that, my bump is continuing to grow and I am starting to feel kicks. And all I want is to pretend not to be pregnant for the next three weeks because if a chromosome disorder is found or the heart gets worse, my husband and I think we would be likely to go down the termination route.

I dont know what I am asking for here, if I am asking for anything, or just venting my just total and utter feelings of misery. Happy to listen to anyone who has had the the same experience and what decisions they made

Hi Op

Wanted to give your post a little bump. I can share my experience but the outcome wasn't positive (although the diagnosis was more complex) so wanted to check if you wanted to hear it before I wrote it all down.

Baby centre have a dedicated heart babies board in case you haven't seen it and there are few charities that might be useful _tiny tickers, heartline and if you are connected to the Evelina children's hospital ECHO. There is also little heart matters which specialises in heart conditions that need that result in a single ventricle system such as hlhs. The fact there is a left ventricle even if it's smaller is positive.

In the meantime be kind to yourself. Do you have plenty of real life support. I found it easier when I told my parents, boss etc as keeping it quiet was a burden

Oh op.. I’m terribly sorry you are going through this. I actually came back here today to post a much-needed update of my own journey of the exact same diagnosis. I documented my own journey on here on-and-off last year. I was in your shoes and you can read everything here www.mumsnet.com/Talk/antenatal_tests_choices/3656634-Heart-abnormalities-20-week-scan

I will say that what your bub has is exactly what we were told during my pregnancy (even the smaller left ventricle). I too feared HLHS although it was something that was never mentioned to us. His left ventricle grew and although it is still mildly smaller than the right when he was born, it’s never been touched and is doing its job.

We have a healthy little 3 month old now, Kylo. You’d never know he’s been theough what he went through. It’s a rough journey ahead and I wish you all the best. You can see more of his pictures on my Instagram (cocop0pz) and feel free to message me at any time if you want to chat.

Thanks littleBelina, tbh I am looking at all possible scenarios here so have read a number of stories of different diagnosies and outcomes, just so that I can understand what we might be facing.

Thanks for directing me to the charities, I had heard of heartline but not the others so I will check those out.

Thankfully we do have a great support network around us, my immediate family knows as does my husband's. I took last week off work, but I have gone back this week, as quite honestly sitting at home thinking about all of this is not helping and keeping busy at least distracts me. My boss has been amazing throughout the whole process - up until now my biggest worry had been telling him I was pregnant, as I only started the job in November. He has taken everything I have thrown at him, and just been so sympathetic and understanding.

Thank you cocopoPz, I must admit I had already come across Kylo's story - have been searching Instagram and reddit for any similar diagnoses. You must be so proud of him, he is gorgeous!

I hope you dont mind me asking, but did they say what the risk was of the left ventricle still not developing as the pregnancy continues? I didnt think to ask, but now I am wondering if the likelihood is that the ventricle will continue to grow with the rest of the heart albeit smaller or whether it could get worse, i.e not develop any further.

The first lot of amnio results have come back clear, I should be happy, but i just feel numb and worried about what is to come with the next set of results and the next scan. If the baby has already not beaten the odds with having a CHD in the first place, I cant help but feel uncertain that they will beat them the next time.

They have moved up my next scan from 27th March, to 20th March. I dont know if that is because they are taking pity on me as I have literally cried in every appointment so far or whether they are worried something will get worse in the next two weeks. At least it means the scan will be before mothers day here

Oh that’s good to know! I did post a lot about him on reddit and always post pictures of him. I’m very proud of him, it always amazes me how strong these little heart babies are!

They never gave info on how the heart may develop as the pregnancy went on but we were told at one point by the cardiologist scanning us that it was early on (26 weeks pregnant) and that the baby had a lot of growing still. Chances are if they have not mentioned HLHS to you, he will probably not be at risk of it however, do ask them any questions you may have as it’s always good to know! Once Kylos aortic arch was corrected his left ventricle became slightly bigger as well.

I’m glad your amnio test came back all good! Please keep us posted and again, if you have questions at any time I’m happy to answer. I know how your feeling all too well.

Some charities that may be able to help little hearts matter, and arc
Sending you good wishes op

So we had our latest fetal echo cardiogram yesterday.

COVID throwing everything off slightly - husband couldn't come in with me so he sat in the car park for 3 hours while I went through a heart scan and a growth scan. I had to be buzzed into every part of the building, receptionist checking if I felt well and sanitised my hands before letting me in, all patients sitting 2ft apart in a reworked waiting room, and everyone wearing protective goggles, masks and gloves. Thankfully they allowed me to have my husband on the phone while they talked through the diagnosis.

It looks like the initial diagnosis is holding, and they are talking about plans for the initial operation not long after birth, and this time they started to talk about organising induction plans. It seems like they are satisfied that they will be able to medically treat the baby not long after birth, with a good prognosis, although heavily caveated to say that major open heart surgery is not easy and it is likely to get a lot worse before it gets better. I am now trying to get excited about the pregnancy and baby again, even though the thought of the baby dying is never far from my mind.