'My baby had heart surgery at just one day old'

Little Levi has already had two heart surgeries.
Little Levi has already had two heart surgeries. Photo: Supplied

Levi is our second child. Very sadly, our first baby girl Angel was stillborn in December 2011. There were no known complications and it was a sudden and traumatic experience for my husband Glen and I still to this very day.

This death changed our lives forever, but did not affect our desire and longing to one day have a child that we could love unconditionally. Falling pregnant again didn't happen easily due to post traumatic stress, but eventually we got pregnant and were thrilled.

After a devastating loss of their first child, Lauren and her husband had hoped for a non-eventful pregnancy but this wasn't mean to be. Glen and I hoped for a non-eventful pregnancy, but this was not meant to be as we found out at 12 weeks pregnant that our baby most likely had a heart problem. We were devastated.

Levis is now nearly four years old and has a sister, India, who is two.
Levis is now nearly four years old and has a sister, India, who is two. Photo: Supplied

We were sent to a specialist for the Chorionic villus sampling (CVS) test that is used to determine birth defects, genetic diseases and other problems during pregnancy. We were then counselled about the most severe heart deformities and told I would most likely miscarry in the next few days.

When I didn't miscarry, we needed to wait until I was 18 weeks pregnant to see a cardiologist, who after reviewing our CVS test said he had only seen a condition like Levi's in textbooks and added, "Don't worry, you will have other children".

We didn't accept this news and flew to Sydney for a second opinion. The doctor confirmed Levi's condition was severe and complex and gave it a rating of eight out of ten, compared to a hole in the heart, which is rated two out of ten. The doctor told us we had a long and difficult road ahead with at least three surgeries and that Levi would one day pass away from heart failure. However he gave us the hope we desperately craved when he shared he had helped children with similar conditions who had gone on to lead fairly normal lives.

At 28 weeks I started bleeding and having contractions, but the doctors were able to stop the bleeding and Levi was born almost at full term at 39 weeks and six days – a rarity for babies with heart conditions. After a quick cuddle, Levi was taken away to prepare him for his first heart surgery, a Glenn Shunt, which was performed the next day. He stayed in Intensive Care for a week, and then another in the ward after which we were able to go home as a family.

Levi's next surgery was at four months of age. This surgery was more complex, as it was open heart surgery and took nine hours to complete. It was a gruelling and emotional wait for Glen and I and when we got the call that Levi was out and in intensive care and stable we were beyond relieved.

Levis is now nearly four years old and has a sister, India, who is two. He sees a pediatrician every six months to monitor his growth and development, which is a little behind average however his speech and language skills have always been way beyond his actual years, to the elation of his doctors. He started pre-school this year, and gets tired more quickly that his peers, but at this age his friends don't seem to notice the difference.

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His next planned open heart surgery is in early 2018. After that, the only other option he will have is a heart transplant, but we hope with all our might that won't need to happen for many, many years to come.

Levi will always need daily medication and regular specialist check-ups but we are so grateful that Australia has all the advances and specialist doctors and surgeons to be able to give him the hope of a life that every child deserves.

HeartKids came into our lives when Levi was born. It is a wonderful organisation that supports children and their families that are affected by heart defects. HeartKids organised care packages for us as well as accommodation while Levi was in hospital, which was something we were especially grateful for as it meant we could be by Levi's side the entire time during his operations and recovery. HeartKids also have given us the opportunity to meet and speak with other HeartKids families, and the support we have had from others going through similar experiences has been incredible. HeartKids has truly been a godsend to us which is why we are throwing all our support behind the HeartKids Two Feet and a HeartBeat 2.1km charity walk which raises awareness of congenital and childhood heart defects and remembers those babies and children born with congenital heart conditions that are no longer with us.

HeartKids Two Feet and a HeartBeat Charity Walk – a light 2.1km walk at a selected venue in your state will be held on Sunday, 10 September 2017. Registrations open at 9am and the walk kicks off at 10am.