Guest Speaker: Jay Kinerva, Adult with CHD

By: Trish Hartwig

Karen, I am a parent of a TOF child so I was very interested in what Jay had to say. I will take the liberty of summarizing some key points. Anyone else who was there can fill in anything I left out. His name is Jay Kanerva & he is the oncology/neurology chaplain at Children's. He is 33 years old & was born in a rural area of Vermont. At 2 months old, his mother took him to the doctor & made him cry ("smacked him in the head") so the doctor could see him turn blue. They drove in a car with O2 tanks & a police escort to Boston Children's Hospital. He had some sort of surgery (he wasn't very sure about this one) & they inserted a shunt. His next surgery was at 8 years old in Cincinnati for a complete repair where they put in a pig valve for his PV. At 13, they put in a larger valve & a pacemaker. After that, he had multiple struggles with the pacemaker & various surgeries to work on it. The problems were due to the technology of pacemakers back then & slightly due to his active life. He had another open heart surgery (I think) when he was 30. His heart is enlarged due to how long he went before his repair surgery. He is currently married & has two kids.

One of his main themes was to treat our heart kids like they are normal!! His parents treated him very normal. He played soccer for a couple of years in middle school/high school. He played the drum & was in the marching band in college. He & his younger brother were always very active. His parents also included him in all doctor meetings & decisions. He always felt that he knew exactly what was going on & so did his brother. He also mentioned that his dad always read up on all heart information & bought him a heart model. They talked about Jay's defect & used the model to understand it.

One tough question that we asked him was if he thought about his own mortality & did he think of this often. He said yes he probably does think of it more than the average person, but it hasn't ruled his life. But he did not think about it as a child or a teenager or even in college. He said it is in his thoughts more now that he has two small children. He will check on them sleeping & hope to be here when they go to prom, or college, or marry. It was very touching, since I know I will often be hit with thoughts of my child's mortality when I check on him at night. But he definitely said it is not all consuming. He had a great outlook on life & seemed very well adjusted!! So there is hope for our kids!! The more normal you treat them, the more normal they will be (OK, that was my own soapbox).

He was very open, very easy to talk to & said he would be happy for any of us to call him. I have one of his business cards & his work # is 314-454-2873.

Blessings on your day,

Trish