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Hypoplastic Left Heart Syndrome- The Story of Owen

Hypoplastic Left Heart Syndrome- The Story of Owen

In February of 2017, we were ever so thrilled to discover we had fallen pregnant after about 6 months of trying. ❤ We already had a beautiful 11 month old daughter and, although they were going to be close together, we were ready to complete our family (and hoping for a boy)- but of course just a healthy baby!

All scans were looking good and we got to find out at around 14 weeks it was a BOY! We were thrilled and started thinking of names straight away. We picked 2 names we liked for him and let our sweet daughter crawl up to the scrunched up pieces of paper with the 2 names on them and let her choose one…her hand grabbed one straight away and we unraveled it.

Our little boy was called Owen and that’s how he was referred to from then on! Looking back now it warms me that his big sister ultimately chose his name.

At about 19 weeks I had a scan done and was on my own, as you never think you will receive bad news. The sonographer told me he spotted that there was a single umbilical artery, and that there looked like there was some blood flow problems in the heart, but not to panic or worry.

Of course that night I googled everything under the sun and could only focus on all the grim outcomes- not the small percentage of good ones.

From that moment I was sad. I was worried and I felt like I had failed. We were fairly quickly referred to a high specialty maternity hospital and maternal fetal medicine specialists, and of course an amazing cardiologist.

We had so many scans, tests and everything done. At first it seemed maybe our boy could get some instant heart surgery done once he was born. Then it was talks of having him over east so the best surgeon’s could work in him. But then there were talks that he may only survive 6 months or 1 year.

But finally after we realised that he had hypoplastic left heart syndrome and a massive ASD, we were told on our last scan our little boy had a 0% chance of survival, and that he would start suffering and most likely pass away in the womb.

That was the moment where our hearts broke, and never again have we been the same people. You go on because you already have a beautiful child at home who needs you mentally and physically, but deep down you feel broken- completely broken.

Rather than letting our baby boy suffer in pain, we made the hardest choice ever to medically terminate, but because it was over 20 weeks it had to go to a panel board to see that we could go through with it.

Those were the worst 3 weeks ever and I wish there could be a better system for the poor mum’s and families who have to wait this decision out, as you are only getting more pregnant and time goes forever.

Due to the 0% chance of survival for our son, of course our decision was approved, although relief nothing but sadness that our baby boy was going to be put to sleep.

On August 4th 2017 at 25 weeks pregnant our beautiful baby boy’s last breaths were taken, and after a 12 hour labour our sweet boy was born.

He was so cute and small and all I could think was how something so perfect looking could be so broken inside.

We took turns of holding him and some of our family came and met him and said hello and goodbye all in the same hour.

I think of Owen everyday and I want him to be known and loved.

Our daughter loves looking at his pictures all the time and loves her baby brother. We have a special spot we can go where some of his ashes are spread.

I’ve since had a healthy baby boy who fills a missing piece in my heart for my son.
Losing a child is by far the hardest thing I’ve gone through but it’s also made me stronger and more resilient.

I wish everyday I was getting to watch my son grow and have him here in the flesh, but I must accept he will only ever be in my heart.

This story was submitted by a courageous mama- Lakeisha Edis.

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