A heart transplant story in a 1-year-old, as told by his mother [PODCAST]

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes

“In January of 1991, at twenty-two months old, Nick had another heart catheterization. Andy and I had started thinking about the next stage of surgery to finish the heart repair. Just before Nick was discharged, I discussed it briefly with Dr. Kanter.

‘Tell me when you would like to do the surgery,’ he said.

‘Never, if it’s up to me.’

We were in no hurry for Nick to go into the OR again. The older Nick grew, the more difficult it became to agree to procedures. At least this operation would be one of the planned surgeries. By now, heart surgeons were doing an additional repair, completing the surgery in two stages instead of one. The positive side was that at least we would be taking a step forward.

Andy and I wanted the surgery date to be sooner rather than later, but we still had questions. I asked Dr. Kanter to call me. He and I discussed the pros and cons of the repair.

There was a pause in the conversation, and then Dr. Kanter asked, ‘Susan, are you sitting down?'”

Susan May is a writer and author of Nick’s New Heart: 30 Years and Counting.

She shares her story and discusses her KevinMD article, “The story of a heart transplant in a 1-year-old, as told by his mother.”

Did you enjoy today’s episode?

Please click here to leave a review for The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out!

Do you know someone who might enjoy this episode? Share this episode to anyone who wants to hear health care stories filled with information, insight, and inspiration.

Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show we have Susan May. She’s the author of the book Nick’s New Heart: 30 Years and Counting, and there’s an excerpt from that book on KevinMD titled “The story of a heart transplant in a 1-year-old, as told by his mother.” Susan, welcome to the show.

Susan May: Thank you for having me. I’m glad to be here.

Kevin Pho: We’ll get into your book and excerpt in a little bit, but first off, can you share your story and journey to where you are today?

Susan May: I’m a mother of four, and my youngest one had a heart transplant. I live just north of Atlanta, and I’m also a prolific writer. I write nonfiction as well as romantic fiction. I work full time as a romance novelist for Harlequin.

Kevin Pho: All right, so let’s jump into the book that you posted that excerpt from on KevinMD. It’s titled Nick’s New Heart: 30 Years and Counting. So Susan, tell me the story that you depict in the book.

Susan May: Well, I talk about my youngest son. He’s actually 32 years old now, and he was born with a horribly bad heart. He had hypoplastic left heart syndrome, which is a fancy name for just being born missing one of the chambers of his heart. He had his first surgery when he was five days old, then when he was three and a half months old he spent seven weeks on a respirator, and then he had another heart surgery when he was a year old. Then, just before he turned two, he received his heart transplant and did exceptionally well for many, many years. He contracted endocarditis, which is an infection around the heart, and had to have an aorta replacement, and that was 12 years ago.

I had written Nick’s New Heart when he was graduating from high school, and it was very much about our family and his younger life. So he’s become an adult, he’s married, he has a child, and he’s gainfully employed, and I guess best of all, he doesn’t live at my house. So he’s grown up to be a functioning adult, which is what his daddy and I wanted him to become. I’m really proud of him, but I try really hard not to let him know how much.

Kevin Pho: That transplant happened about 30 years ago, and you’ve certainly had some time to reflect on that. So take us into those early years and paint a picture of some of the challenges you and your family faced during those initial years.

Susan May: One of the first ones that comes to mind is that Nick is the youngest of four. If I had had him three weeks earlier, I would have had four children under the age of four. So we were already a very busy, busy house when he came along, and any chronically ill child consumes the family. There’s a 60 percent divorce rate for families that have chronically ill children, so that was a concern. Finances were a large concern. But that is all under the umbrella of wanting your child to live. We wanted Nick to grow up and be a part of our family, which he has achieved.

But I’m pretty sure I’m about the only one who thought he would ever live 30 years with the same heart. So he’s been really exceptional, but there were super-duper challenging times, and emotions ran high more than once.

Kevin Pho: What were your interactions with the medical team like during that time?

Susan May: Well, I still love my medical team from that time, and I say that because I still see them regularly and stay in contact with them. That goes from the heart surgeon, who was Dr. Kirk Kanter, to Nick’s anesthesiologist, Dr. Bruce Miller, and his transplant coordinator. Ironically, Nick’s transplant coordinator, who sat with us the night of Nick’s heart transplant, is his adult transplant coordinator now at Emory in Atlanta. And a lot of his ICU nurses, I’m still in contact with.

They were our support group; there’s not a doubt in my mind about it. It was really important for my security, not so much Nick’s, because he was just a baby and didn’t know, to have the same people in our ball game. I liked seeing the same nurses every time Nick had to go to the ICU, and I liked seeing the same nurses when we were on the floor, because they had gone from being just nurses and doctors to friends.

Kevin Pho: Sometimes, from the clinician perspective, we always hear about what we did wrong, but it sounds like in this case your medical team did a lot of things right. So from the perspective of you and your family, what are some specific things that the medical team did right? Because sometimes we need to hear what we’re doing well so we can continue doing that.

Susan May: They listened. They trusted mama’s gut when I would come in and say, “Something’s wrong. This is not right.” I wasn’t beyond asking to have a certain test run or asking questions. Now, that was very much a two-way street, because I did what they told me to do to take care of Nick, probably almost too rigidly. If they said, “Give him this medicine, do this, show up for this test,” I did what they told me to do on that day. So whenever I had a problem, they trusted that I knew what I was talking about. They listened, and you could tell from the looks on their faces that they loved Nick. They loved what they were doing. They were eager to have Nick get better and live and survive.

They’re a text away still today, even though a lot of the doctors and nurses are in the pediatric area. If Nick gets in trouble today, I text him and say, “Is there anything else you would do in this situation?” Because they’re still as concerned about him now as they were then.

One of the things was that Dr. Kanter called after Nick had had a long stay. He called and asked, “How is Nick doing?” So we weren’t forgotten just because we weren’t in the hospital. And Dr. Miller, his anesthesiologist: Nick was put to sleep, oh, I couldn’t even count the number of times. Even this past week, when Nick had to go in for a test, he said, “You know what I thought about? Dr. Miller telling me to count backwards from a hundred, and him talking about you in my ear.” Those things matter. They really do.

And another instance with Dr. Miller: When Nick had to have an aorta replacement, I wanted him there to put Nick to sleep, and his daughter was getting married. He said, “I can’t be there.” And guess who showed up for Nick’s surgery? There was Dr. Miller. He said, “I don’t really matter in the picture,” and I said, “Yeah, you do. If somebody thinks they’re going to die, they want a friend to be the last person there speaking to them.” Nick came through it, but it was tough. But yeah, y’all do a lot of things right.

Kevin Pho: You’ve had a few decades, certainly, to reflect on the initial transplant. Knowing what you know now, is there anything that you would have done differently if you had to do this all over again?

Susan May: I don’t think we really had a choice in that. So I’d have to say probably no, because at the time of Nick’s first surgery, he either had the surgery or was going to die. There wasn’t a question about that. By the time the transplant came around, there was a debate about that, and we followed Dr. Kanter’s lead and the fact that Nick had no antibodies to make that decision. When it was all said and done, we went to pathology to look at his heart, his old heart, and the pathologist said there’s no way he would have survived another surgery. So we felt very confident about the decision we had made about that.

Nick’s over six feet tall now. He would never have grown that tall or been able to play tennis, water-ski, or snow-ski. I don’t think he would ever have physically been able to do those things if it hadn’t been for a heart transplant. So yeah, I’m comfortable with our decision.

Kevin Pho: We’re talking to Susan May. She’s the author of the book Nick’s New Heart: 30 Years and Counting, and there’s an excerpt on KevinMD titled “The story of a heart transplant in a 1-year-old, as told by his mother.” Susan, a lot of families unfortunately have to go through having chronically ill children and the whole procedure that accompanies that. After reflecting on your experience, do you have any advice for these families who may now be going through similar experiences?

Susan May: My advice is to trust your medical team, and if you are not completely comfortable with your medical team, ask for a second opinion. There’s nothing shameful about that, because if you don’t trust your medical team, you’re always going to be fighting that particular battle. Write your questions for your doctor down so that you can honor their time and yours as well, and so that you know you have all your questions answered.

Don’t make demands of your doctor. My trust was that if I called, they knew something was really, really wrong. I didn’t abuse that. I was even given personal phone numbers, and I made sure that it had to be something that was seriously wrong in order for me to use that number. I honored them, and they honored us. And the biggest one is to live your life and appreciate what you have now, and take advantage of what you have now, and not worry about the future. It’ll come soon enough.

Kevin Pho: Are there any other messages from the book that you want to share with my clinician audience?

Susan May: I want to remind you that the book is not just facts and figures and stuff about transplants. It’s about how a family feels and reacts and deals with a chronically ill child. I think anyone would get something from the book about working with a family and how a family perceives what’s going on when their child is chronically ill.

Kevin Pho: So tell me a story from the book that’s particularly poignant about how your family persevered through this challenge.

Susan May: I prayed that Nick would live and survive, and the first day of school is very traumatic for most mothers. I guess in some ways it was dramatic for me too, but for him to live to be old enough to go to school, it was a big deal. He was at the end of our driveway with his brothers and sisters, waiting on the bus, and I drove over to the school behind the bus, the school’s not far from my house, to walk him into school. He didn’t need me. He had been in and out enough with his brothers and sisters, and he said, “I got this.”

I kind of cried on the way home, and I got home and I said, “You know, this is really what I had prayed for and hoped for, for him to grow up.” This was a joyous day, not a depressing day. I spent it watching TV with my feet propped up, and I thought, “You know, this is good. This is a good life.” It was also a big deal for him to get married and have a child. Every time he made a milestone, that was significant. I’m always looking forward to him growing up to be an old man.

Kevin Pho: My final question: What’s your take-home message that you want to leave with the KevinMD audience?

Susan May: Transplants save lives and give you quality of life. That was one of the things Dr. Kanter promised me. He said, “He’ll have quality of life.” Because Nick had a heart transplant, he has had quality of life. I took a picture two weeks after Nick was transplanted. He’s playing in the dirt and has mud, I mean, from head to toe, which I’m sure in the medical community was not the right thing, but he was having a good time. I sent that picture to Dr. Kanter, and I said, “You promised me quality of life, and for a two-year-old, a mud puddle is it.” So I’m grateful for the donors, and I’m really grateful for the medical care that Nick has had.

Kevin Pho: Susan, thank you so much for sharing your story and insight, and thanks again for being on the show.

Susan May: Thank you. I appreciate it.

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes