Beth's Story

Diagnosis: HLHS

By Beth's Mother

My partner and I have been together for nearly four years now, and we decided, for many happy reasons, to try for a baby. We have a fairly big age gap: he is 38 and I am 20, and he already has kids.

It took us only a month to get pregnant. Looking back I realize I took it for granted a little bit. But I was very excited, albeit a little nervous as this was my first pregnancy. All the signs pointed to a very healthy baby. I had a fair bit of sickness early on but I gave up smoking and drinking and I took up swimming and continued exercise. I reviewed my diet and took folic acid.

My early eight-week (dating) scan showed a strong heartbeat, although all the way through I can't explain it but I felt something wasn't quite right. I started to feel at ease when I got my blood tests back, I even paid for a special one to show the risk of a chromosomal defect. My tummy started to expand and my scan showed everything was fine, except they could not pick up a heart measurement.

The sonographer asked me to go for a walk to try to get my baby to move position, but she didn't so they asked me to come back the next week. I went back not at all nervous, and my dad came with me to see the scan of his first grandchild. They scanned me for a very long time and two consultants came in and took it in turn to try to get her measurement.

After nearly an hour they told me they didn't think my baby had a left ventricle. I assumed they could fix it, but they explained it was a very, very, difficult procedure often with a poor outcome and said I might want to think about termination.

I was very shocked and upset. They said they would send me to St. George's hospital in London to have a fetal echocardiagram to confirm this diagnosis, which unfortunately, it did. They said heart transplants especially for infants did not come around very often, and a heart transplant is always a high risk operation, more so in a newborn baby as they are so unstable.

The other option was a three-stage surgery. At first my partner and I thought this was a glimmer of hope in what was otherwise such devastating news. Then they told us the first operation carries a high mortality/morbidity rate, if she got through labour and if she got though this, then there would be at least two other open heart operations, if not more due to complications, before she was two years old.

As this procedure was only palliative and not a cure, she would eventually need a transplant. The procedure could only give her a maximum window of 15 years life expectancy. Her heart would be very weak and very likely to have a lot of complications along the way. Having a heart transplant could mean possibly other heart transplants as her "new" heart may not grow with her, and a life of drugs, immunosuppressants to stop her body rejecting the heart(s), which would leave her susceptible to illness.

During the initial procedure, she would need drugs to thin her blood as it would be likely to clot -- leading to anything from heart failure to a stroke. After all this, and if she made it to adulthood, I would probably outlive my child. Weighing up all these things, we decided fairly quickly as I was nearly 21 weeks, that the kindest thing to do would be to let her go peacefully, before she ever knew pain or discomfort.

I was induced a few days after I had my "bad news" scan, and delivered my tiny baby the next day on the 15th December 2002. It all seems a bit of a blur, like it was happening to someone else, partly because I was trying to blot it out, and partly because I was on self-administered morphine.

The reality of it all has since set in. I was lucky to be able to hold my baby afterwards. She was perfect, and to me, although very small, very beautiful. It was hard to believe anything was wrong with her.

We agreed to an autopsy because we wanted to make sure and know exactly what was wrong. I thought it might help them to treat this rare condition in the future. The results showed she had no left ventricle at all which was the main defect, but also a double outlet right ventricle, her pulmonary artery was too big, her aorta was too small, she did not have a mitral valve, or an aortic valve and her left atrium was too small.

We decided to scatter her ashes in our local crematorium in the baby garden within the remembrance gardens. It was nice to be able to say goodbye properly, although it was also such a devastating end to a happy pregnancy. I hope I never have to go through such an awful experience again.

One day, when we do have another baby, we will tell him or her when they are older, that they also have a big sister that they will meet one day, who mum and dad wanted and loved very much, but had to let go, and that her name was Beth.


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