A conversation with Renee and her son, Hunter, who live in Texas. Hunter is 10 years old and in fifth grade. Renee spoke first and then Hunter shared his thoughts about having a pacemaker.
This story reflects one person's experience. Not everyone will experience the same results. Talk to your doctor about the benefits and risks of your treatment options. St. Jude Medical does not provide medical services or advice as part of this Web site.
Renee, why are you familiar with St. Jude Medical?
Just pretty much with Hunter. We had to get a new pacemaker he actually had a Medtronic one and they switched over to St. Jude Medical.
What is Hunter’s diagnosis and what was the situation surrounding his diagnosis?
When I was between 4 and 5 months pregnant they couldn’t find his heartbeat on the device and we went and did an ultrasound and saw his heartbeat was slow. So they quickly sent us to a specialist in Houston for high risk pregnancies. They diagnosed him with congenital heart block. This was while I was pregnant. Our question was how? They said it could be—we have to wait until after pregnancy—but you could have lupus which could cause this. After he was born they ran the test and found that I do have lupus and found that it caused the heart block.
What type of doctors did he see and what were their roles?
Well, I had my regular ob/gyn and we waited two weeks and then from then on I saw the specialist in Houston for high risk pregnancies. We’d drive back and forth. Later on in the pregnancy we did see the pediatric cardiologist. It was probably five or six months into the pregnancy before we saw him.
How much time elapsed between Hunter’s diagnosis and when he had his pacemaker implanted?
Actually, the day he was born—January 25. They told us, “you know that we’re already aware of this slow heartbeat” and they said they were going to monitor him overnight. They did that and then sent a cardiologist in. He said that the monitoring showed that he needs a pacemaker. So when he was one day old he had the surgery.
Who helped you through this experience?
It was my husband and me at the hospital at the time. But family and, of course, the doctors.
Did you feel like you got enough information beforehand from your doctor, or did you go in search of more? If you went looking for more, where did you find it?
I think they gave us a lot of information but still you always have those questions that you want to know more. We did get a lot of information but we were still curious and wanted to know more. We went online and Googled things. And my sister would call me and say she was looking it up and found things. So pretty much the computer.
Initially, did anything scare you about the pacemaker?
Everything, really. Just that, well, it being his heart. An essential organ. I was scared of the surgery and recovery.
I wish that I had a web site like this St. Jude Medical site with stories when I was going through this situation.
Going into the procedure to have Hunter’s pacemaker placed, what did you know about the risks?
Really, I didn’t know a lot. My husband was the one talking to the cardiologist at the time. I was recovering from the c-section and then I had a high fever. Every day was something different. My husband was the one with Hunter. And then I was on medication and so it is still very foggy. I am sure he knew a lot of the risks. But that is not something I remember from that time.
Did he experience any complications?
No. None at all.
How does his pacemaker help you?
It gives me peace of mind. Because I know without it he wouldn’t be able to live a normal life. He wouldn’t be able to have the energy to do what normal kids do and what he does now. It just gives me peace of mind because I know that he can get through the day. His heart rate is at 45 beats per minute. Without the pacemaker, he would have no energy to do anything.
What surprised you during this experience?
Just how normal he can be. I have an older daughter and I just thought,“oh my gosh, this is going to be a whole new experience.” We have to go through the surgery and doctor appointments. But everything he can do—other than sports. We don’t have him do any of that. But he is a normal kid.
Do you feel confident in Hunter’s pacemaker? Do you place a lot of trust in it? If yes, please share why.
Yes. Because I know that without it, it just wouldn’t be the same at all. It would be totally different. And I know that when I was pregnant with Hunter the doctor would always tell me, “I will see you in two weeks if you make it to then” because it was a high risk pregnancy. And then when it came to my scheduled c-section, then it was, “If he survives….” So it’s a miracle he is here because it didn’t seem like I was going to have a positive outcome. So every day I think about how lucky we are.
What is it like on an emotional level living with the device? Do you ever have stressful feelings about the pacemaker? If so, how do you manage those feelings? What about Hunter, what is his attitude toward the device? Any stress surrounding it?
Oh definitely. Yes. I was very protective, overly protective of him to the point where I wouldn’t let him out of my sight. My mom and sister talked me into letting him go to a preschool for two days and then we went to three days. This helped me get rid of the anxiety. The whole time—for three hours—I would be wondering if he was okay. Then, getting older and starting public school all day was another challenge. I got a part time job to get my mind off of it. Then it comes to surgeries and worrying about all of that. It’s very stressful. I still feel stress about it, like when he does horseplay with my daughter. Now he’s 10 and says he’s fine when he does it, but I don’t think I’ll ever get over that.
Describe your interaction with his doctor(s) throughout this experience—from the beginning until now. What is that relationship like?
It’s been more the nurses. We are very close and I feel like they are a family. They just love Hunter and we send them school pictures. We are really close like that. I really love all hospital staff hospital. We get there and sign in and they already know him and it’s kind of like a family.
Did you access any support groups or other resources to give you peace of mind? What about Hunter, did he?
We leaned on family and friends. We didn’t use support groups.
After the procedure, what type of follow-up care did he require? Will he need a replacement device at any point?
He goes once a year. But he has surgeries. So right after surgery he goes once a month and then three and six months later for follow up and then at a year. We call over the phone and they do a pacemaker check over the phone every three months. If they don’t find anything going on over the phone, then we’re good for the next three months. Otherwise, we have to go in but that has never happened.
He has had a replacement. At age 3 he had a lead that fractured so they went in and capped off the lead. He had a two-lead device and so again at age 4 the other lead fractured and they went did a pacemaker lead replacement. After that it was when he was seven years old and they moved the pacemaker from his abdomen to his chest because the life of his battery was expiring. And he hasn’t had anything since then. At 12 or 13 he’ll need a battery replacement.
What is required for the care and maintenance of the pacemaker?
Nothing really. Just the appointments.
Do you have to keep anything in mind when traveling with the device? Have you ever had to find a doctor while traveling?
No, now if we travel by airplane we keep a card because it is possible that it can make the alarm detector go off. So we keep a card saying he has a pacemaker. But other than that, there’s nothing. But if we have a problem while traveling we’d call his cardiologist and go from there.
How often does he see his doctor? What type of doctor? What happens during those appointments?
He sees his cardiologist once a year. He needs an EKG, an echo, stress test, an X-ray of the pacemaker, and a pacemaker check. They split those tests up over two years. He goes home with a Holter monitor which is pretty much a tape recorder and he has to have it on for 24 hours. And that’s about it.
What are you looking forward to? What is Hunter looking forward to?
I’m looking forward to him living his normal life. When I was pregnant I was just devastated. I didn’t know how everything would turn out, if he would live a normal life. How anything would be. The last ten years I’ve realized that it is pretty normal. He can do everything that other kids can. We kind of hold him back—his cardiologist has told us to stay away from contact sports. When he was three and four years old, we did YMCA sports. He participates in phy ed, but we don’t put him in a team sport. But he is interested in other things and can do pretty much anything that everyone else does.
What would you say to someone who was considering a St. Jude Medical pacemaker?
It’s worth it. It gives you peace of mind. I’m a worrier and I worry still. But I’ve learned to not worry as much.
Hunter, how does your pacemaker help you?
Well, it speeds up my heart because I was born with a slow heart. Actually, I can’t play sports because it can get hit.
Do you notice your pacemaker?
Not really because they moved it up to my chest. When it was in my stomach it felt like a rock was in my stomach. But now I don’t notice it at all.
How do you feel about your pacemaker?
I don’t really know. I don’t have many thoughts about it. I’ve had it since the day after I was born. It feels like it’s just a part of my heart.
What do you have to do to take care of your pacemaker?
About every month or so I have to do a pacemaker check just to be sure it is working well.
What do you think about your pacemaker? Do you ever have scary thoughts about it?
I don’t really think about it much.
What would you say to a boy like you who might have to get a pacemaker?
Don’t worry, the doctors can do it and you will be asleep the whole time. It doesn’t hurt at all.
Does it bother you to go to the doctor appointments?
What bothers you about them?
That I have to leave for a while and then we don’t come back until night so I don’t really get to play.