Coarctation of the Aorta – Nova’s Story

Little Nova was diagnosed with Coarctation of the Aorta and VSDs at mum, Rachael’s 22 week scan. This is their story:

22 Week Scan

‘At my 22 week scan, the sonographer noticed a defect. With further checks they found Nova had
Coarctation of the Aorta and large VSDs. They told us she would need surgery soon after birth.

After an emergency c-section, Nova went to GOSH and I was left to recover and follow. Nova
had her first surgery at three days old, where her Coarctation was repaired and a PA band
fitted to restrict the flow caused by the VSDs.

This unfortunately didn’t go as planned. My tiny girl came back on the highest level of cardiac
support they could offer. After replacing the blood in her body three times over and massaging her
strawberry sized heart, we were lucky she came back to us.

Heart Failure

After five long weeks, we went home only for her to go into heart failure soon after. We were
told she was 24 hours away from a cardiac arrest and needed to have a stent fitted.
At exactly five months old, Nova required another operation to repair her aorta and remove the
band.

Early Diagnosis

If Nova’s condition wasn’t picked up on my scan, the outcome would have been severely
different. She may have died at home without us realising she was in heart failure. Or, she may still
be here with us, but she wouldn’t have had the pre-planed procedure and possibly not within GOSH.

Being diagnosed early in the pregnancy meant not only did Nova get the immediate medical
attention she needed to save her life, but that Aaron and I could come to terms with the fact we
wouldn’t be bringing a newborn home from hospital. We were able to go to GOSH while I was
pregnant, see the wards and meet other parents going through the same. After seeing
babies with wires, machines and drains, I knew what to expect. This made it less of a shock when she
came back from theatre.

We cannot thank my sonographer enough as in a way he saved not only Nova, but us all.

Find out more about Coarctation of the Aorta here.