1st pregnancy terminated because of HLHS. 2nd miscarried, 3rd with high NT and fluid around body. Can I get more unlucky?

[Daphne78]

Hello - I've been reading these forums since the beginning of my last pregnancy, spring 2011 and since then I've had so many horrible things happening to me that I wanted to share my story.

In April 2011, I got pregnant with a very wanted baby boy. All was going well until my 20 week scan, where the DR saw something wrong with the baby's heart and referred me to a fetal cardiologist, who confirmed the baby had a major heart defect (Hypoplastic Left Heart Syndrome, meaning the baby had less than 1% chance of survival). Very sadly we terminated the pregnancy on the 20th of August, the worst day of my life. The labour was very painful, physically and emotionally and I still burst into tears thinking about my beautiful baby boy. My DH and family have been with me throughout the process and shared my pain, for which I am very grateful. But at the end of the day, I don't think anyone can really understand what the mother feels like.

We needed a couple of months before we could start trying again. In December, I figured I was pregnant again and EDD calculators showed that my due date was 20 August, the day of my termination! I was so happy and I thought this was karma and I would have a precious baby the day I had lost my baby boy. Unfortunately I miscarried this baby at only 5 weeks.

And finally, in April 2012 I got pregnant again and I was over the moon. I had a couple of early viability scans which all showed a strong heartbeat and I was certain everything would be good this time, after 2 heart-breaking pregnancies. Unfortunately, at 11+4, the NT scan showed 3.8mm and some fluid around the tummy, which I understand could have 3 reasons: 1. chromosomal abnormalities 2. Another heart abnormality 3. Infections such as parvovirus or toxoplasmosis. We immediately had a CVS (yesterday, which was a Friday) so we should have the initial results on Wednesday/Thursday

I cannot believe I could be so unlucky. The DRs doubt that the two incidents are linked but then the question is why me again? I had suffered so much the first time and I could never never never imagine I would have the strength to go through such a thing a second time but here I am again. I know that many women ended up having healthy babies after high NT scans but our history with the heart problem and the liquid on the tummy worry the doctors. We cannot do anything but wait, which is killing me.

Apologies for the long post, it just feels good to share the story with other moms & mom-to-bes. I hope nobody has to go through what I've experienced over the last 10 months, the worst in my life so far. I wish you all happy & health pregnancies

Hi Daphne.

I am so, so sorry to hear your story.

We felt we also had our share of bad luck. We struggled to conceive, after 2 years got pg but it was ectopic. I nearly died.

We then had 4 further losses between 8 and 12 weeks over the next 7 years.

We finally had success after nearly 8 years and now have 2 1/2 year old DTs.

It was so hard to get through that time. Something that helped me at the time was this phrase "Courage does not always roar like a lion. Sometimes it is the quiet voice saying 'I will try again tomorrow'"

I do hope you have some positive news from the CVS.

Hi Daphne,

I'm so very, very sorry. You are right it is just terribly unfair. I lost a little girl in 2010 after the CVS revealed a terminal diagnosis but i can't imagine the pain you are in faced with having to potentially go through it twice.

I will cross everything that they are wrong but if not and the worst is confirmed then don't give up. It will happen for you xxx

hi daphne. I have had a similar experience - I also terminated a late pregnancy because my little girl had hypoplastic right heart. I already had two children, I then had a healthy boy and then another pregnancy with nuchal of 6 and hydrops (the fluid) it was down his back. I had a termination and now have another baby.

It is really really shit to have this happen more than once, I presume from your post that you dont have other children and I really feel for you but i wanted to post because I have some and in particular a healthy baby following two terminations, just to show it is possible really and that it doesn't mean every pregnancy is cursed. I hope your current pregnancy is ok, hydrops can rectify itself - see posts from pinkprincess (or peelprincess) I think at the time of my last termination (oct 2010). For myself I couldn't go through another late termination and my baby was found to have downs at cvs so I terminated as quickly as possible.

Again, I hope you are lucky, take care of yourself x

Thank you all for your good wishes and sharing your stories. I am very happy to hear the happy endings. I will keep you posted with the CVS results and the next steps.

daphne - I'm so so sorry to read your story. Life can be so damn unfair.
There are a few people on here who have been through this twice and actually a lot of them such as Manitz, have gone to to have a healthy baby. It can and does happen.

I truly hope that you get good news from the CVS and you'll be on here again telling us that. Do let us know how you get on.

Thinking of you x

Hi Daphne

So so sorry to hear your experience but I also wanted to give you my story in case it helps.

I sadly terminated my first pregnancy in April 2009 after the baby was diagnosed with T21 and serious heart defects. It was my first pregnancy and I was completely and naively expecting to sail through the 9 months without any problems. After the termination, I was desperate to be pregnant again as soon as possible, and indeed fell pregnant just 2 months later, but that pregnancy ended in miscarriage at 7 weeks. By the time I fell pregnant for the third time just 4 weeks later, I was an emotional wreck. However, everything with that pregnancy proceeded smoothly, despite my terror, and our little boy arrived in June 2010.

Because of the problems we had already had, we didn't want to leave it too long before trying for another baby, and I fell pregnant once again last summer. Again I found the process horribly hard, even though all our family kept telling me that we'd had our share of "bad luck". We had an early private scan at 8 weeks and saw a heart beat. But the 12 week scan was a nightmarish deja vu experience. The NT reading came back almost identical - in fact, slightly higher at 4.7mm, than for the first pregnancy that we terminated. It was so like the first time - to begin with the sonographers were very chatty, but then fell increasingly quiet as they did the measurements, and when they told us the news, I remember repeating over and over that I couldn't do this for a second time. They said that they expected the baby either to have a chromosomal abnormality, or if not, then a serious heart defect, given the readings. We went straight to CVS as we couldn't not know. But somehow, miraculously, the results came back clear for chromosomal abnormalities, even though I hadn't let myself hope. We had further detailed heart scans straight afterwards and at 16 and 20 weeks as they were still concerned about potential heart defects, but nothing was picked up, and our lovely little baby girl arrived 2 months ago.

I know you must feel that it's impossible to be optimistic about what might happen, and I know that allowing myself no hope was the only way of getting through the wait. And no one can guarantee anything for you. But like the others have said, there are positive outcomes, and it could be the case for you. Just do whatever you have to do to get through the next few days and please know that there are people here thinking of you.

Thank you so much for your messages and I really appreciate you sharing your stories. I am really sorry to hear that you had to go through very difficult periods like me, and I am very very happy to hear that most of you had healthy babies.

I do have a positive feeling (it is just a feeling) that everything will turn out fine. I would love to become a mother so I hope to give you some good news as soon as I hear anything

So sorry you're going through this. I've had 3 miscarriages so know that awful scan feeling well. DD was threatened mc (subchorionic haematoma with heavy haemorrhaging). Then pg #5 I had bleeding and the NT scan gave a measurement of 4.2mm and fluid round the back of the neck (9mm). Prognosis wasn't good and I couldn't believe it was happening again.

That foetus is currently curled up on my lap with a post-feed smile on his chubby face, now almost 4m old. He is absolutely perfect.

So no, it doesn't look good right now but it's not necessarily the worst. Fingers crossed for you.

An update email and unfortunately it is not good news. This morning I returned to work after a couple of days of bed rest. As soon as I arrived to the office I started bleeding so went straight to the emergency gynecology dept at my hospital. The scan showed a strong heart beat and the baby was moving quite a lot but I continued to loose a lot of fresh blood so I knew it was not right. We had a call from the fetal medicine unit when we came back home to tell us about the CVS results, which came positive for T21 (Downs). We will go back there tomorrow morning to discuss the results. Obviously it was no surprise for anybody although I had a (false) positive feeling for the last few days.
Thank you all for your support and good wishes

Daphne, So sorry to hear that. I hope things are not too terrible for you over the next few days. If you wish for support in the future I found a lot of like minds in the thread for those who have had terminations and its sister thread for those who ttc following a termination. I wish you all the best. x

My first pregnancy was totally fine and I had a lovely baby boy in 2001. My next pregnancy was fine until the 20 week scan when the sonographer told me she "wasn't experienced enough to check something so had to call for help" and suddenly about 6 others came into the room, including my consultant, who said that the baby had a cleft lip and palate and other physical deformities, heart defect and most likely Edwards syndrome or another very life limiting genetic syndrome. I was absolutely floored, but thought perhaps it was an Aprils fool (it was Arpril 1st) cringe. Anyway I was offered amni and CVS, but declined them as I wasn't going to consider a termination anyway, but the pregnancy was well and truly spoiled as I was thinking about how to get through the babies funeral. At 24 weeks i had a massive bleed and my waters broke so I admitted to hospital where they said I would deliver probably within the next 24 hours, so I waited and waited, and 12 weeks later I was still waiting!

Anyway, to cut a long story short she was born at 36 weeks, alive and well apart from spending 6 days in SCBU for some respiratory distress. She had a cleft lip and palate, but her heart seemed fine (and it turned out to be) and she is nearly nine now and doing fine, apart from some other health problems. When she was a year old we got a confirmation that she does have a rare syndrome, and the chance of this happening again was about 1 in 20. We felt that was very high so decided to leave our family at that, only to discover that I was pregnant the next month. It was very shocking to discover at the 20 week scan the same diagnosis, but with the added soft markers of cystic fibrosis. Again we didn't want further testing and aside from the cleft lip and palate she was fine.

We talked for several years about a fourth child and were told "lightening can strike twice but definately not three times" so after a year of trying we got pregnant, and at the 20 week scan it was confirmed again.

i know a few people with children who have dows syndrome and if it hepls they are all doing really well :-)

daphne I'm really sorry to hear about your pregnancies especially for what you're going through at the moment. I sadly terminated my pregnancy two months ago for severe congenital abnormalities at 21+ weeks. I am devastated, although that is not the point of this post.

I don't know if you've found Antenatal Results and Choices, but I have found them a great source of comfort and help during the last two months. The ladies there have been so understanding and I have found that on a closed forum I have felt able to be more open.

Thinking of you over the next few days.

Sorry, had to rush off. I meant to add also that the ladies on this board were an immense support to me too during my awful time, so keep posting if you need too. X

Daphne, I am so sorry to hear your news. I see from another thread that you were able to have a surgical termination and that you found that a little easier to cope with than the medical one you had last time. Not that anything can really help in a situation like this.

We've had internet problems this last week so I wasn't able to come back any earlier to see how you were. I have been thinking of you though, and will continue to do so. Things will work out for you, I'm sure, and you will soon have your healthy baby, even though it might feel very far away right now. My very best wishes.

Thank you all for your kind messages. I don't think the pain ever goes away fully but i hope time will help. I am now with my parents for a few weeks, being with family in tough times feels really good.
The doctor told me to start trying again as soon as i feel ready. I hope to give some positive news in the near future

Hi daphne - just to say I have been in your position twice too. I'm sorry this is happening to you. If you feel the need, please join the ARC forum as there are a few of us who have faced this more than once. There's also this board, just so you know: community.babycenter.com/groups/a6728469/multiple_terminations_for_medical_reasons

I think you are being very brave.

M

Thank you mb2512cat. Will join the ARC forum

daphne, i just wanted to wish you all the best, i lost my son to heart problems, and its terrible your going through all this, it is so unfair.

really hope it works out for you