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Transposition of the Great Arteries: Levi’s Story

Levi’s congenital heart defects, Transposition of the Great Arteries and a VSD, were detected at his mum, Natasha’s 20 week scan. After putting up a very brave fight, Levi tragically passed away, leaving his parents and two brothers devastated. This is his story:

Transposition of the Great Arteries LeviDuring Levi’s 20-week ultrasound, they couldn’t see what they needed to see with his heart. So, we were asked to return a week later to try again – he was a wriggler.

On the second appointment, the sonographer was still concerned with his heart and referred us to Cardiff University Hospital Fetal Medicine for a cardiac specialist to look at his heart.

Transposition of the Great Arteries LeviOn the 29th April 2019 our world felt like it came crashing down and all our hopes for a healthy baby boy were gone. It was confirmed that Levi had Transposition of the Great Arteries (TGA) and a hole in his heart (VSD).  We were told it was better for him to have the VSD with the TGA and that the TGA would be fixable after open heart surgery, in his first week of life, with a 98% survival rate. We left the appointment feeling a bit more positive. We then went on having scans every three weeks in Cardiff and also appointments at Bristol.

In the next months, our excitement built along with that of our two other sons, Lucas and Leon, who saw our baby boy quite often on ultrasound scans.

Then on the 7th August 2019 we got the call we had been looking forward to but also dreading, to ask us to go in and be induced.

On the 9th August 2019, our baby boy Levi was born with Transposition of the Great Arteries, a complex heart defect, at St Michael’s Maternity Hospital in Bristol.

At just six days old, Levi had open heart surgery.Transposition of the Great Arteries Levi

We almost lost our baby boy during the surgery because the hole in his heart was hard to close. When he came back to intensive care, he was put on the ECMO machine, which gave his heart and organs the rest they needed.

He remained critical. Every hour was a blessing and, as days passed, he was weaned of the ECMO machine. After an hour of fighting, our baby boy he went into cardiac arrest and it took 22 minutes to restart his heart.

Transposition of the Great Arteries LeviDoctors decided to put him back on the ECMO and a plan was made to take him back down for surgery to see what else could be done. After another few days back on ECMO, the doctors saw on a brain scan that our baby boy had developed bleeding on the brain. Still, he continued to fight and was again weaned off the ECMO.

It was so hard as he didn’t look like our Levi because he was pumped with fluid to keep his blood pressure up. He then developed more bleeding on his brain and slow kidney failure.Transposition of the Great Arteries Levi

On 26th August 2019 Levi just couldn’t fight anymore. It got too big for him and we had to make the hardest, most heart-breaking decision of our lives to turn of our gorgeous boy’s life support.

Our Levi passed away in our arms.

We still don’t know what went so wrong. Now the wait continues for post mortem results.

 

We have worked with some parents who have been through the loss of a baby to produce a video called Dealing with Bereavement, which you can watch here.