Rebecca’s story

Rebecca shares her difficult decision to interrupt her pregnancy.

I was 25 years old and had a daughter of five, before I had my daughter I had previously experienced terminating my first pregnancy at five months due to a chromosome abnormality, I was only 19 and completely unaware of these devastating situations. After this traumatic event I was told that the chances of this happening again were extremely unlikely as it was a fluke.

Well it did happen again… I was pregnant with my second child and it was a boy, I was really happy! I was obviously anxious because of what had happened to me previously. I had an amniocentesis done at three months pregnant to check that my baby had no chromosome abnormalities which is scary on its own due to there being a risk of miscarriage. It felt like a long two weeks waiting for the results but finally the news I had been waiting for had arrived, it was all OK. I couldn’t have been happier.

At my five month scan, my partner and I were so excited to see our baby on the scan, we even brought our mums along to share the experience. We went in emphasising how happy we were that we were having a healthy boy and how we were going to name him Charlie.

As the doctor was measuring my baby she took a long time looking at his heart… I felt myself welling up as I just knew something was wrong. She said that my baby’s heart wasn’t showing any circulation on one side. I immediately asked if it was serious and she replied that if it was what she thought it was, then yes. She said she would have to get a second opinion from a specialist but our appointment wasn’t for another week. I was devastated! I felt like I wanted to go to sleep and wake up in a week’s time. Our parents were also in a terrible state.

I got home and went straight on to the internet to see what I could find out about this condition (Hypoplastic Left Heart Syndrome). I felt so lonely and helpless. I found the British Heart Foundation where I was then put through to Little Hearts Matter. They were incredibly understanding and sent me out a pack which arrived the next day, it consisted of a DVD and a book, I immediately played the DVD, where it had a doctor explaining the heart condition and parents who had given birth to a child with this condition and another couple who chose not to continue with the pregnancy. After watching the DVD I had a long and emotional conversation with my partner where we went over and over the decisions. Before I had my second scan we had already made the decision not to continue with the pregnancy if the condition was confirmed.

Our worst nightmare came true, it was confirmed, our little boy did indeed have a very serious heart condition. I was told that they would bring me back to hospital in four days time to go ahead with my decision. The days dragged, it felt like my Charlie was moving more than ever, I kept thinking how can I go through this again, I felt like I was going to kill my baby. How would I feel when it was over? How could I tell my daughter? Why me? Why can’t this be just an awful dream? I had nobody to go to, and people I normally spoke to felt like they couldn’t talk to me because they didn’t know what to say. It felt like weeks until I went back to the hospital.

The day finally came, that morning in early February was very cold. I was led through the labour ward where all the other women were having their healthy babies and having the most wonderful experience any woman could go through and then there was me, in the same situation I had been in six years ago.

The first thing they needed to do was to put my baby to sleep, I wanted to be put to sleep myself, the only positive thing was I had my partner there to support me. It was the worst feeling in the world feeling my little boy wriggling around as though he was telling me he was fine and not to go through with it. I remember that moment when they laid me down and put my baby to sleep. I was devastated, I couldn’t talk to anybody without bursting into tears.

It took a whole day and a half till I finally went into labour. The pain was intense but I didn’t care. My baby boy was very small, no bigger than a Barbie doll. I couldn’t look at him for a few hours after because I was rushed into theatre as my placenta wouldn’t detach. I just remember crying and holding the nurse’s hand. The staff were amazing.

After the trauma of all of this we had baby Charlie buried in a cemetery not far from us where we like to visit now and then.

About three months later I got pregnant again which was extremely scary for me wondering if I would have to go through the trauma again.

When I had finally gone through scans and blood tests it was confirmed I was pregnant with a healthy baby girl! I was so happy. Our little girl is now one year old, and very healthy and happy. I now know after everything I went through that I made the right decision for us.

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    “Jasper, 15, HLHS... half a heart not half a life... ❤”

    So awesome to see our young members, just like Jasper here, getting out and enjoying the sun!

    It is important for all of us to protect ourselves from the effects of the sun, but it is essential for anyone who has only half a working heart. Remember to drink, you need to maintain hydration for a good Fontan circulation, in this heat they get dry very quickly.

    We have a full resource on staying safe in the sun, for people with half a heart, read it here: bit.ly/lhm-safe-in-the-sun

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    19 hours ago  ·  

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    “Six years today since Bethany had her Fontan procedure. Grateful to God for how well she is. We all enjoyed some wild swimming in the Thames this afternoon! She was the first in the water and went in more than any of us! Half a heart but definitely not half a life!”

    “Bethany loves swimming. Unfortunately her swimming lessons have been cancelled since March and not likely to start up again until September at the earliest, so we are taking every opportunity to swim elsewhere.”

    Awesome update from LHM parent member Caroline, mum to Bethany here, born with a single ventricle heart. We are encouraging swimming for our members as part of our new ‘get fit for winter’ resource, created for our members. Some swimming pools are just beginning to open for exercise rather than just a splash around. If you have always been a good swimmer and like this style of exercise, it is a great way to exercise the heart.

    Follow the guidelines set out to keep the swim Covid safe. We know that more chlorine is being added to the pool and fewer people are swimming at a time. Make sure you get dry and dressed quickly after being in the water because getting cold is a problem for some Fontan hearts. Wetsuits can help.

    Read our latest resource for LHM members here: www.lhm.org.uk/information/lifestyle-information/get-fit-for-winter/
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    2 days ago  ·  

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