Hypoplastic Left Heart Syndrome: Gabriela’s Story

Evita discovered that her baby, Gabriela, had hypoplastic left heart syndrome (HLHS) at her 20 week scan. Read their story:

After having two boys, we were so excited to have our 20 week scan where we found out we were having a baby girl. However, I was sent for a repeat scan because the sonographer couldn’t see all of the baby’s heart.

At the time of the second scan I wasn’t allowed to be accompanied by my husband (due to the pandemic), but I wasn’t worried. My other kids were absolutely healthy.

At the end of the scan, I was told that there was something wrong with my baby’s heart and I needed to see a specialist in another hospital.

It was a horrible two weeks of waiting, but I tried to keep myself calm.

On the 6th April (at 24 weeks pregnant), I had my appointment with the specialist at the Fetal Medicine Unit. After the scan, they took me to a special room and told me they were going to find my husband in the car park. That was the moment I got a feeling I had never felt before- horrible emptiness and fear.

We were told our unborn baby had hypoplastic left heart syndrome (HLHS) and that she probably wouldn’t survive until birth. Doctors and nurses tried to explain every outcome to us and gave us these choices: terminate the pregnancy, let her pass away after birth or attempt the three stage surgeries to try to keep her alive for some time.

That was the worst day of our lives. I haven’t stopped crying since then (though I do it much less often now). We didn’t know how to tell our children and our families. I remember sending a message to my family saying that we might not have our baby very long.

We wanted to give her a chance to live and fight and we promised each other that we would do the same for Gabriela ️.

After that, we lived with many appointments and hoped she would make it to birth. This medical world was so unknown to us (especially as we’re originally from Latvia) and we didn’t knew what to expect.

On the 21st July, at 18:03, Gabriela was born screaming! Ziggy and I were so proud of her already. In the next few hours she was taken to Alderhey and put on Prostaglandin to keep her alive until surgery.

Gaby was breathing by herself and we spent those first days cuddling her. Her first surgery, called the Norwood, was set for the 27th July. That morning, all I kept thinking was that I didn’t want them to take my beautiful baby away and stop her little heart. She looked so perfect to me, but I knew she needed the surgery.

The horrible hours of waiting began. And she made it through, she did it!

After being in PICU for five days and having some ups and downs, Gaby was transferred to the ward where I was able to be with her 24/7 again.

She recovered well, getting through an infection, low oxygen, a fast heart rate and loads and loads of medications. When Gabriela was only three weeks and two days old we got best news – we could go home!

Gaby finally met her big brothers. We still have so many ups and downs, so many appointments and so many stressful days, but feel more than proud of our beautiful baby girl.

I will always be grateful to those surgeons, doctors and nurses who saved our little warrior princess and so thankful for all support from amazing heart groups and other parents.

We’re slowly preparing for Gabriela’s next surgery, called the Glenn, not knowing if she will get through it and not knowing how long we will have with her…

Deep in my heart, I know she will grow up, despite the odds of having only a 50% chance of reaching age five. There will be no day without her beautiful smile.

Update:

We went to Gabriela’s CT scan on the 21st December and her oxygen kept dropping down to 40%. Doctors made the decision to keep her in over Christmas and do emergency Glenn surgery on 29th.

She nearly didn’t make through as she was bleeding out so badly. It took four hours of blood transfusions to make her stable enough to transfer to critical care. Surgery wasn’t as successful as they had hoped because it was impossible to open her arteries enough. She will require more surgeries in the future.

We had a really tough week in ICU but Gabriela is such a fighter and after a week, we were transferred back to HDU for recovery. Gaby was in loads of pain, she had a chest infection and her oxygen kept dropping.

However, we were eventually allowed home. They took her off her oxygen and she managed to stay stable without it for half a day, so we were able to go home.

I still can’t get my mind around all that’s happened, but I feel so happy that she’s home.

Unfortunately, we were told that her surgery wasn’t as successful as they had hoped, so Gaby will probably need many more surgeries. Fingers crossed she will stay strong so we can finally enjoy life.

Gaby’s such a happy little girl. She keeps us going and enjoys every single day, especially during these hard times in the world.

Find out more about HLHS here.