James Smith had a heart transplant three years ago at the age of five. His mother, Holly Smith, sat down for an Editors Office Interview as part of a 4-part series during the month of February. Each week, The Manning Times will highlight a person who has been affected by heart problems to raise awareness during heart health month.
Editor, Jake McElveen: Your son had a heart transplant when he was five years old.
Holly Smith: Yes, on his birthday.
E: What were some of the complications leading up to that?
H: There weren’t many. We were on our annual beach trip, and he was four at the time. He spiked a fever, and we couldn’t get the fever down. My late husband was a pediatrician, and so we left the beach early. My son had a small cough, so we got a chest x-ray. Before I could walk over to my husbands office, they were calling him. They said that my son was in heart failure and that he was going to die if we didn’t get him to MUSC.
E: I can’t imagine how terrible that must have been.
H: It was. So, we immediately packed our stuff and went to MUSC. We finally got his temperature down, and got his kidneys functioning properly. They said he had Restrictive Cardio-myopathy. And the only quote “cure” was a heart transplant.
E: Was there a waitlist?
E: How long was he on the list?
E: We were on the list for nine months. They had to do a full work-up. They have to make sure that your brain, lungs, kidneys, liver, and all other vital organs are working. Then they had to make sure he would be a productive member of society, that he wasn’t in a bad living environment. Once all of that was completed, and they got all of his lab results, he was immediately put on the transplant list. They told us to keep our phones with us 24/7, that we could receive a call the second we leave here.
E: But it didn’t happen that fast. When did it become critical?
H: No. Fast forward to May, and we had not received any phone calls. We had follow-up appointments, and they checked his heart. But he had to have some dental work done. When you have heart disease that young, it effects your dentin, which is the thing that protects your teeth. His teeth were starting to decay, he was getting large cavities. His regular dentist said that he wouldn’t touch his teeth except for cleanings because of the heart disease. We took him to MUSC, and they have a pediatric dentist. I decided to pack an overnight bag, because I had that mom feeling that something was going to happen.
E: What happened?
H: An hour later, they came out and told us that he went into cardiac arrest as soon as they went to intubate. They had to pump his chest and breath for him to keep his lungs and heart moving as much as they could for 52 minutes. He was stabilized, but he was in Pediatric ICU from then on until the transplant.
E: This might be a little personal, but what did the doctors give him as far as life expectancy without the transplant?
H: Without the transplant, he wouldn’t make it.
E: So it was something that had to happen.
H: Without the transplant he would have been called home.
E: How did the community respond?
H: It was such an overwhelming feeling of love and prayer. Everyone did more than they should have. LMA had a James Smith day, where they had a parade for him. All of the grades made banners, and he got to ride in a convertible. They had a bake sale and a balloon release, and he got to throw the first pitch at a baseball and softball game. It was amazing.
E: They had a wear green for James day, right?
H: That was James Smith day. They made T-shirts and sold them, and all of the proceeds came to his fund for the medical bills.
E: Were they any signs before-hand that that could happen?
H: No, he was just little. He was very petite. But, I am 5’5” and his dad was 5’8”. He was just a small bugger.
E: He is 8 now, how have the past 3 years been?
H: Crazy, to be honest, just crazy. We were down at MUSC for 12 weeks total. He went into cardiac arrest, he was admitted into the PCICU, and at that time he was on various machines. He was living off of machines. Then, at 5:28 p.m. one day, there were three doctors standing outside his room. It was my shift, because I never left unless it was to take a shower, and so I just looked up and said “oh, sugar.”
E: Did they have good news?
H: They asked me where my husband was, and I told them that he was with our younger son at the Ronald McDonald house. They told me I needed to get him over here immediately, and it was the only time I called and he didn’t answer the phone. But then I got good news, they had a heart.
E: How was life post-transplant?
H: I took him home with a pump, and I had to give him medication through two IV lines in each arm. It really sounds like a lot now that I’m saying it out loud. He ended up getting a G-Tube, which is a little button that you open and feed him through. He wouldn’t eat much during the day, so we fed him throughout the night with the G-Tube.
E: How long are we after the transplant at this point?
H: Still within the first six months, easily. We get him healthy enough to get the G-Tube pulled, and then the IV lines come out around the seven month mark. Then, they had to go in every four to six months through an artery to check his blood pressure.
E: Were you ever worried about his body rejecting it?
H: At any given time his body could reject the organ, because it isn’t his. He was on steroids for about six months or so, because his body was rejecting it. We got cleared about six months ago, right before my husband passed, and he wasn’t rejecting the heart anymore. Now we are down to two medications.
E: Tell me a little bit more about him, what does he like to do?
H: He is normal boy, every day, all day. You wouldn’t even know the child had a heart transplant other than his scars. He loves to be outside. Him and his little brother will full-on WWE off of the couch and body slam each other. They are all boy. They ride scooters and bikes and play basketball. He loves video games, and swimming. Just off the charts all-boy.