Coping with Scars
Mom: You have been in the pool before where people asked you about your scar like, “What is that?” remember? She is her own person, so it’s interesting the temperaments of the two sisters. One’s more self-aware and into what everybody thinks, and one’s not –it’s the right child with the pacemaker. What do you think, Alexandra?
Alexandra: Well, Mom does say that I have more muscles than my twin sister.
– Alexandra, age 8, and her mother, Pacemaker
Mom: Emma, do you still have the spots on your thighs where the catheters went in?
Emma: Yeah. They’re very faint but you can see them still. They kind of look like freckles.
– Emma, age 9, SVT and her mother
Leah: People don’t see my scar.
Mom: How do you respond to your scar? How do you act about it? Are you ashamed of it? Are you proud of it? Do you hide it?
Leah: I hide it.
Mom: You do?!
Leah: I don’t know.
Mom: She’s been wearing a bikini all summer long. Right, Leah? We do our best to help her with that, in that she’s not embarrassed about it, that this is something that has saved her life. She’s proud of it, but at the same time, I try to teach her that she’s more than just her heart defect. She’s more than just the scar, she’s a beautiful child on the inside. While she may only have half a heart, she’s got a bigger heart than anybody I know, and she’s just an amazing child. She’s smart, she’s loving, her love for God is incredible, so there’s more things about Leah than just her heart defect.
So to my knowledge, unless something has changed, she’s never been embarrassed or ashamed of her scar. She would always be quick to lift her shirt, so we would always tell her, “Hey Leah, you can’t lift your shirt for everybody, you’re getting too old to just raise your shirt!” Is that right Leah, do you agree with that?
Leah: I used to call my scar my zipper!
– Leah, age 10, and her mother, HLHS
Coping with anxiety and pain
Alexandra: When I was going to the hospital with pneumonia I was really, really nervous and then I started crying because I hated the needle.
Mom: But usually for your cardiac appointment there’s no what?
Mom: When we went, we always plan on getting a treat afterwards that only you get, not your sisters, right?
Alexandra: Yeah. Hot chocolate at Starbucks.
– Alexandra, age 8, and her mother, Pacemaker
My SVT was only really scary and painful because I would kind of be out of it. I would be like my heart was racing so fast I wouldn’t really be able to speak and one time at a birthday party I had SVT in the pool, and the adults didn’t know what it was, and I didn’t know what to say. So yeah, that was scary. It’s kind of like—when you get it, you’re kind of out of it, I think I managed to say, “Hang me upside-down.” When I was little you just pulled your knees into your chest to get it to stop, and then that position didn’t work anymore, so I had to hang upside-down. Like one time with my cousins, they were young so they couldn’t hang me upside-down, and no adult was home, so I did a handstand and they grabbed me, and that’s how I got it to stop. That’s what the doctors told us to do when it happens.
– Emma, age 9, SVT
Sometimes my chest will hurt, but it will rarely happen, and it will rarely be bad. Sometimes it hurts, and sometimes it kind of stings—not stings, but sharper. Sometimes it doesn’t hurt as much, sometimes it hurts a little more, sometimes it’s not that long, sometimes it’s longer, but yeah, I think it’s only like ten or fifteen seconds. It’s not regular, but I’ll just do whatever I’m doing, I’ll be able to do it. My family’s helped me by telling me I get to get something after an appointment or they help me and give me advice to know it’s not going to hurt or anything.
– Austin, age 10, TOF
Mom: Leah also had plastic bronchitis as a result of these heart surgeries, and then she had about a year where she was coughing up casts, which are lymphatic fluid, and blood, so yeah, those are all times that she remembers. Leah, did you have any pain with those? Or what were your feelings about that?
Leah: Sometimes I had pain. One time, it took me four hours to cough a cast up!
Mom: It was a scary night when she was struggling and she formed these casts in her lungs that if she doesn’t get them up would obstruct her airways. One night she coughed non-stop for about four hours until she finally produced this cast that I couldn’t believe was in this child’s airway, and that was hard, that was painful, and exhausting for her.
Leah: I fell asleep right after it was up.
– Leah, age 10, and her parents, HLHS
Dad: She had a broken bone in her chest due to the surgery, so she is sensitive to weather, she can tell when the storms are coming. But there wasn’t too much pain in recovery. As far as recovery that is the one part of your chest, your sternum, that you don’t move unless you are doing push ups or certain things like wearing a backpack. She had to have her backpack carried for the first month.
Sierra: If it hurt at school, I would go to the nurse and feel better.
Dad: First surgery, she was shy in school but I think the next surgery made her bounce out of her bubble. But first surgery she did experience anxiety, she had to come home. I think it was related subconsciously to having gone through the event of surgery.
Sierra: I just felt really worked up.
Dad: She would be nauseous. Occasionally she would have to come home from school. It might have been a month or so after the first surgery but after the second surgery she went right back.
– Sierra, age 13, and her father, Anomalous Aortic Valve