Heart surgery for an Atrioventricular Septal Defect

Here is a post on why Coraline had her operation, to read if you’re interested in the details.

Congenital heart condition

At birth we learned Coraline had a heart condition called Atrioventricular septal defect (AVSD). She had two holes in the heart and a leaking valve. About 50% of babies with Down’s Syndrome are born with a heart condition, so they checked for it when she was born. She went with Kevin in an ambulance at three days old to the Evelina London Children’s Hospital where they confirmed it.

Coraline had one hole across the upper chambers of the heart (the right and left atria) and one hole across the lower chambers of the heart (the right and left ventricles).

We thought surgery was going to be in her first three months of life but they felt she was doing well so delayed it. We have been to the Evelina for regular appointments throughout her life.

Heart operation at fifteen months old

At each appointment Coraline and I take a picture before meeting Kevin inside the hospital. This one is from October, and you can see Big Ben in the background. At this Cardiology appointment on 8 October, at 14 months old, they saw that the leak on her left atrioventricular valve, which had been mild, was now severe. The left side of her heart had dilated and they said every time her heart beat a quarter of the blood flow was going the other way. We were asked to keep her well in October as she would need to be well for them to operate on 2 November. So we stopped attending baby classes and so on.

The surgeon told us it was an unusual scenario as her body had tried to repair itself, and tissue had formed itself around the lower hole across the ventricles. We had thought her top hole across the upper chambers (atria) had closed but when the surgeon came to operate he found it was still there (her valve had been obscuring it). He repaired her valve and repaired both holes.

Open heart surgery recovery period

Coraline has a six week recovery period at home where we must keep her well (so we won’t go to any classes and check everyone we see is well), and pick her up in a scoop fashion (not under the arms) and we can’t use our beloved sling! For the first nine months of her life we had also been asked to keep Coraline well so it is a familiar scenario to us, though it requires some vigilance on our part! #ourstory #amazingnhs