If you have not experienced handing your child over to a surgical team, with all the hope and trust and faith you can muster, still unsure if you will ever see your child alive again…I can’t help you understand what it feels like.
I don’t like reliving surgery day, and ours was fairly routine. Again, Kiran’s heart stuff, though critical and complex, has truly been the least of our worries. The kid has been a good heart patient, textbook recovery, few hospitalizations…I count all these blessings often, as I watch so many other CHD kiddos travel more difficult roads with their heart journeys.
Surgery day, though, was one of the most difficult days of my life. There is so much waiting. When you are a person who struggles with anxiety anyway, surgery day brings about an anxiety rollercoaster. You get an update and it calms you for a period of time, and then the anxiety slowly creeps up and up and up until you can hardly stand it, and then you get another update. It was exhausting, and it was a day full of simply sitting and waiting.
I don’t remember what I did to even pass the time that day. I honestly feel like I was just sitting and waiting for the next update. I had people who love Kiran and love me around me for support, but we all just…sat. It’s terrible. It’s the worst wait I can fathom.
We traveled to California for Kiran’s open heart surgery. Dr. Hanley, a surgeon at Lucile Packard Children’s Hospital, pioneered the unifocalization surgery Kiran needed. Remember how I said we were thankful for his MAPCAs after birth? Well, we were. They were reliable enough that he was able to grow and get stronger, and he didn’t require surgery until he was ten and a half months old. However, these tiny collateral arteries, helping blood get from the heart to the lungs to get oxygenated, were what made his surgery complicated.
Dr. Hanley essentially went in and spliced open these tiny arteries and patched them together to create pulmonary arteries. He was also able to do Kiran’s full repair during the surgery. Don’t be fooled: Full repair does NOT mean Kiran is now “cured” of CHD. That’s not a thing. It simply means he was able to address the TOF defects in the heart and repair them to make the heart work as closely as possible to a normal heart. For now.
Kiran will face at least one more open heart surgery in his lifetime. The pulmonary valve his body didn’t develop? He now has a donor valve. It will have to be replaced at some point, and it is small enough that it will need to be another open heart surgery. The hope for the next valve replacement (there will be a minimum of two in his life) is that the valve will be big enough that it can be done in the cath lab.
One more planned surgery. This isn’t to say there couldn’t be more. We have no idea when his pressures might get too high or a valve get too leaky…It’s a journey; we haven’t arrived at any sort of destination. We are simply stable. For now.
I don’t like to write about the surgery, because I don’t like thinking that we aren’t done. But that is the reality of congenital heart defects. If you are born with a CHD, you will have a CHD for the rest of your life. No cure has been found. You will have to be more closely monitored, you will have more risk of hospitalization due to other illnesses, you may have physical restrictions placed on you….any number of paths can become reality. But the reality is: It is lifelong. There is no cure. And Kiran’s reality is: This intense 14-hour surgery wasn’t the end of his surgical story.
And it gave him one helluva battle scar.