Gifts from the Heart

babyjamie

I think we all become very close to doctors who do special things for us. Who save our lives or those of someone we love. We look up to doctors as saviors, healers, someone with special powers. We cling to their every word and hope for a magical fix. My experiences with most of the doctors in my life have dramatically changed me, one for the worse, many for the better. Today I received an email from someone very special from 22 years ago. I’ll get to that in a while.

My family doctor has been with me for 30 years. I trust him completely. He has never led me astray. He helped me raise my kids, listened to me when I cried, gave me advice and confidence, worried about me, worried for me, worried with me. I’ve always been able to count on him, no matter what. If I call his office and say I need him, he works me in that day. I love him dearly and owe him more than I can ever convey. He’s an extended part of my family.

When my youngest son was born on Oct. 13, 1994 I had no idea he would have a rare heart condition. Had it been known, he would have been born at the Medical University of South Carolina in Charleston, as he needed immediate medical intervention. He was born with pulmonary atresia, tricuspid stenosis, and atricular septal defect. He was taken from me immediately and transferred to another hospital in Greenville that had a level 3 NICU. I left the hospital 5 hours after he was born and went to the other hospital with him. It was there that we first met our cardiologist Dr. Horne who would be with us until Jamie turned 18 and had to transfer to an adult cardiologist. The same day Dr. Horne told me what was wrong with Jamie and that he had to go immediately to MUSC. He had to travel by helicopter however it was a stormy day and we had to wait for the weather to calm before it would be safe to fly. Once Jamie left, I then drove to Charleston (yes, still the same day I had given birth), a 4 hour drive from home. Should you be wondering where the “baby daddy ” was, he was sleeping in the car as I drove because he had been up all night and was tired. No, we are no longer married. Go figure. When I got there Dr. Horne was already there waiting for me and would end up coming to Charleston for the next several years every time Jamie had an appointment. If I said that was frequently that would be an understatement.  At four days old Jamie underwent a cardiac cath to attempt a procedure never done on a child in South Carolina before. Dr. Wolfgang Radtke would attempt to use a laser to burn the flaps of Jamie’s sealed pulmonary valve open. He worked on Jamie for 10 long hours. The procedure was unsuccessful and Jamie almost didn’t recover from it. I then met Dr. Hani Hennein, a brilliant man, one of only 23 in the world who could perform the kinds of intricate surgeries needed for these conditions in babies. The procedures developed to keep babies like Jamie alive had only been created 9 years prior to Jamie’s birth. The oldest living person with Jamie’s condition is now 31. Dr. Hennein explained to me what would be done. He would replace Jamie’s bad valve with an adult cadaver valve and partial pulmonary artery. It took many hours and at one point I was notified they couldn’t get Jamie off the heart/lung machine. His heart didn’t want to beat on its own. Finally, hours later, success. His heart was beating and he was being moved to recovery.

Jamie stayed in Charleston for two months in the hospital. A stay that long provides lots of time to get close with hospital staff. Many late nights Dr. Hennein would come in our room to check on Jamie. He had his own family at home but I believe was married to his passion. I remember one time I talked to him about the genetics department doing genetic testing on Jamie because it is quite common for a baby with a heart condition to have multiple other issues/syndromes. I was overwhelmed with this and he looked me straight in the eyes at 10:00 PM and said “You have a strapping young man. There is nothing else wrong with him.” He was right.

During Jamie’s stay in the NICU we had a cardiology fellow assigned to him. He was a handsome young man who didn’t look old enough to be in medical school. I remember him well. John Clark. There are two reasons I remember him so well. First, he took such good care of Jamie. And secondly, Jamie was his last patient at MUSC before Dr. Clark left to accept his first “real” position in Dallas.

As things went along, Jamie had many more procedures to include cardic caths, stents, the amplatzer device, etc.etc. etc. He was supposed to have two more open heart surgeries before the age of three but dodged them due to his heart recovering so well. Dr. Horne called him his best success story.

Dr. Hennein would eventually leave to accept a position at Loyola Childrens Hospital. He kept in touch with us over the years. He promised to continue Jamie’s care if we wished. He offered to make arrangements for Jamie to be treated wherever he was at the time. Dr. Hennein often went to third world countries to operate on the poor and underserved. We lost touch after a while and several years ago I was saddened to learn some difficult news. I looked him up on the internet hoping to again thank him for his kindness and care for Jamie. I was saddened to learn he had committed suicide. Hearing this was like a kick in the gut. I felt I had lost a part of us.  I am now in touch with his family. In particular his sister who produces television documentaries in Chicago. From what I understand, while a brilliant man, he had his own demons like most of us. God rest his soul.

More recently, I decided to look for Dr. John Clark to see where he had ended up. I found him at Akron, Ohio Children’s hospital. I emailed him several weeks ago and had forgotten all about it thinking the email would never get to him. Tonight I received a reply from him. He remembered us, described Jamie and me and offered some very kind words.

For those of us with special kids, the doctors who treat them remain in our heart forever. When Jamie turned 18 and Dr. Horne talked to him about having to transfer to an adult cardiologist, he explained that he would be retiring soon. My goodness how time flies. It was difficult. Jamie cried. Dr. Horne cried.He gave us his home phone number, which we have never taken advantage of, to help ease the transition. Life goes on and the angels in our hearts keep multiplying.

Dr. Bandisode is now our new angel. She’s as special in all her own ways as the rest. God bless them all.

bandisodev_bandisvm

jburmuda

This is my amazing son, Jamie, age 21 in Bermuda, 2016.

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