Kylan’s Journey with Abernethy Malformation

by Sarah Edgerton

Our, now almost 17 month old, son was born with  Congenital Heart Defects or CHD and at two weeks old we found out that he had a complex anatomy, but up until recently we didn’t know just how complex it truly was.

On September 22nd of this year Kylan began coughing up and vomiting blood. We rushed him to our local ER, where he had to be intubated because his oxygen saturation was 60, and from there he was airlifted to Children’s Hospital of Atlanta, where he has been in the PICU since. On September 25th our lives were forever changed when we were told that our son has an extremely rare and incurable condition that he will not be able to grow up with and on October 2nd he was diagnosed with Abernethy Malformation.

Kylan has an innumerable amount of AVMs (arteriovenous malformations) all throughout his liver and both lungs, which under high pressure rupture and cause internal bleeding. Since being here at CHOA he has had to have an emergency procedure done to stop bleeding in his lungs and another to stop bleeding in his liver. Unfortunately this will be a reoccurring process. The more AVMs that are embolized, the more that will potentially rupture and bleed.

When we were first told that Kylan has Abernethy we were told a liver transplant would keep his lungs from bleeding again, but have since been told that isn’t the case. He not only needs a liver transplant, but a double lung transplant as well, which is not done in babies his age, and double organ transplants are basically unheard of. We don’t know when the time may come, but his doctors have told us to be prepared for the fact that someday bleeding will occur in an area where nothing can be done to stop it. Despite what they say we still have hope and faith that won’t happen, but we do not take our time with him for granted and are enjoying every moment, hour and day that we get to be his parents.