My baby’s heart defects: Albert’s Story

Stevie’s baby, Albert, was diagnosed with multiple heart defects at her 20 week scan. Here she shares their story:

Albert’s heart journey began at our 20 week scan. It was October and the previous December I had miscarried what would have been our second baby.

I fell with Albert in May/June 2019 and I was so frightened of losing him, I couldn’t enjoy my pregnancy until I saw him on the big screen! The 12 week scan went well, however he was a monkey – upside down and back to front!

I had an early gender scan at 17 weeks because I was too impatient and excited to find out… but I knew all along he was a beautiful baby boy.

Nothing was mentioned about his heart so, coming up to the 20 week scan, all that was on my mind was, ‘is he still a boy?’

Having had Arthur two years before, I knew what the scans entailed. We were in there for a long time. The sonographer looked at all different positions to check his heart becuase he was laying slightly awkwardly (typical Albert!) My heart sank. I just knew.

After not being successful with the heart, the sonographer was checking his lips and face and I couldn’t understand why. She then turned and apologised to us, but she thought our little rainbow baby had a serious heart condition called hypoplastic left heart syndrome (HLHS) and said we would need to be referred to Leicester. As it was Friday afternoon, we wouldn’t be seen until Monday.

To say that weekend was a painful one would be an understatement.

Monday came. We travelled to Leicester Royal Infirmary and were seen by a doctor who said Albert didn’t actually have HLHS. Although Albert’s left side was underdeveloped, it had the capacity to grow with him.

They also picked up bilateral superior vena cava (SVC), hypoplastic aortic arch and coarctation of the aorta. They were worried about the size of the aortic valve, but it was serving his body.

After the scan the nurse took us to a side room to discuss everything. She gave us the details of some charities and told us to have a little look. And that’s where we found Tiny Tickers! We had this amazing website literally at our fingertips! I read a story about a little boy who was diagnosed with something extremely similar to Albert and it was comforting to see him looking so healthy.

Scan after scan Albert got bigger and stronger. He was always ever so naughty and didn’t like being prodded and poked for heart checks. He would turn around, upside down… He had had enough of scans. That’s when I knew he would be ok.

We called him Lion Heart.

Being Albert, he turned breech for the last few weeks of my pregnancy, and nothing enticed him to turn back round, so a C-section was booked in for 39 weeks.

Albert came out absolutely squealing! He was a healthy 8lb3oz and was taken immediately to start prostin. The next morning he was discharged from my local hospital at Kettering and transferred to Glenfield. I followed shortly after where I stayed until we both came home four weeks later!

During the Echocardiogram it was found that Albert also had multiple VSDs, one being extremely large. So surgery was set for when he was one week old. He had a PA band and arch repair. He requires further surgery in the near future, but looking at him you wouldn’t know he was so poorly.

I believe that the universe will only give you what you can handle and Albert was certainly sent to us for a reason!

Well done little Lion Heart.


Find out more about different types of congenital heart defects here.