Miranda: I took her three days after we got home to the pediatrician to get that chest tube stitch out, and she was fine in the office, but as soon as we got in and I sat on the exam table, she started to really lose it. She definitely had this association of someone pulling out a stethoscope, someone listening to her heart, and then the act of someone poking around and trying to take a stitch out, she got much more upset about that than she normally would have I think. But on the flip side, when we took her to the cardiologist after that, she was pretty calm, and he listened to her heart and she just had this look about her like, “I’m watching you. If you do anything more than listen to my heart we are going to have issues with each other.” So there’s definitely a weariness, but also a familiarity with someone listening to her heart or—Allen, you went to her echo and you said that went fine.

Allen: Yeah, those two appointments were within the first week. I took her for an Echo and you would’ve thought we were going to the zoo. She had a great time. Maybe we just got lucky with what they were showing on the TV, but we sat in the waiting room and she watched TV and then when it was time to go in, we went in together and she got weighed and measured, and I sat down on the chair, she sat on my lap, we watched TV for half an hour as they did the echo, and we went down and had a muffin and she thought it was great. Maybe she’s a pro now. I don’t know what it is, but she had a great time. Sometimes when mom’s around there’s a little bit more anxiety just because mom’s the safety net. That could be a part of it too.

 – Miranda and Allen, parents of Serena, age 2, ASD

 

He usually has a catheterization every two years and I know how invasive and how serious even that is. We play it off to Austin as, “It’s just a cath, we’re going to be home in one day.” The last one he had, I remember he had a difficult time. It was during this past year and he was petrified. He had just been talking to his teacher at school, she knew how scared he was and how nervous he was about it, it had affected him at school. He said to me, two nights before we went in, “What if we just don’t go? Will I be okay? What if we just don’t go?” And I explained to him, “Your doctors all know what’s best for you, and we have to go.” Though I know that many times before, especially when he was a baby and I knew I had to hand him back over for a surgery, I used to think “Just don’t go. What if we just don’t go?” Of course we’d never do that, but it’s a thought. You just don’t want to do it. You just don’t want to do it.

He’s gone through the same emotions that we’ve all gone through—you get mad, you get angry, you get scared, the “Why?” He went through the “Why me?” Getting upset has been more of, “Why can’t I play football? Why can’t I…” as he gets older.

The fear of going into the hospital—there’s so many reminders to him. I mean, he’s finally starting to get a little better with having a blood draw or if he’s got to go in for a lung scan and he needs an IV put in. He went last year, he did amazing and I look back over the years and think, “Oh my God, he’s come so far.” It has been so traumatic for him. I can’t even count how many times he’s had to be stuck with a needle, or gotten an IV. He’s so much better than he used to be. And that’s been gradual.

I remember when I started him in preschool, and it was the first day and he got dirty. The preschool teacher had taken him in to get his change of clothes, and she put on the gloves, the plastic gloves. And he went crazy. Hysterical crying, they couldn’t calm him down, they called me like “We can’t calm him down.” I went racing up there and picked him up and he just was crying hysterically. She said “I don’t know what happened” and as soon as she said, “I went to put on gloves,” I said “That’s it. He thought you were going to stick him with a needle.” And I said “You know what, we’ll try this again next year.” I wasn’t ready. I came home and told my husband “He’s staying home with me another year. He’s not ready, I’m not ready.”

 – Grace, mother of Austin, age 10, TOF

 

Nathan: I think it’s been so long since we’ve had to deal with any issues, it’s not even stuff that she thinks about right now. The only thing she deals with on a daily basis and she does a really good job with it, is taking her medicine and moving on. It’s a secondary thought. It’s just a normal day, take your medicine and do everything else like a normal family, a normal person.

Donna: We strive for normalcy. We didn’t go through all of this to live in fear, live in a bubble. You know, you go through all of this to help your child have the most normal life that a child can have.

 – Donna and Nathan, Mother and Father to Leah, age 10, HLHS

 

From the time she could really understand, she understood that there was something wrong. Her surgery was all about her knowing what they were going to be doing. With her pre-op visit, the doctors explained it at an appropriate level, they’re very good at making the whole family aware of what’s going on and not just telling the parents and having the kid out of the room. They think it’s important for the child to have an understanding of what’s going on, and I agree with that, so she knows that she’s going to get a defibrillator at some point.

At this point I think she really wants to have the defibrillator because we carry an AED around with us, and she has to take it with her when she goes places and it’s always wherever she is. At school it’s the same thing, whenever they go off property at school on a field trip or something like that, there’s a backpack that goes along with her with her AED in it, and that bothers her at this point, like “I really just want to get rid of the backpack, when am I going to have this thing put in me?” So she sees it as something that will normalize her life and make her appear more like all the other kids because she doesn’t have something that’s a physical reminder and a physical sign to everyone else that she’s different somehow.

So there have been times when Raegan has gotten really frustrated with it like, “Why do I have to do this? Why can’t I do this? If I could do this when I was little why can’t I do it now?” We’ve had those conversations and she gets really frustrated. She’s very stoic and very tough and she tries her hardest not to cry, which I don’t get, but that’s just what she’s made of. We’ll sit together and I give her a hug and I explain it as best as I can. I said “I know, it’s totally unfair, it totally sucks, it’s no fun, it’s all the bad words you want to say put together, but that’s the way it is and we just have to deal with it and we have to hope that there’s new good medicines and treatments coming down the pike. Someday this isn’t going to be as much of a problem as it is now, but this is what it is now and we just have to live our lives around it and not let it control our lives.”

We’ve gotten very good at that, lately I’ve probably gotten even more lax with her. I let her go for walks with friends without her defibrillator, I’ll let her have a sleepover and I won’t like meet with the parents ahead of time and explain everything to them. Just a couple weeks ago she had two other kids at the house and one of them knew about the condition so I had her bring her backpack and I told her, “Just make sure Abby knows where the backpack is because if anything happens, Abby knows what it’s for. She may not know what to do with it, but she’ll at least know to tell the parents that this backpack that has the machine that you use if this happens.” We’ve been told that after the myectomy, the chances of anything happening are so slim at this point, it’s more of, “Well we have the defibrillator anyway, we’ll just keep it. We might as well just send it with her.” But there are times that we send her without it because I want her to have as normal a childhood as she can have. So I resign myself to saying, “Okay, she needs to have a normal childhood, so I will take on that extra risk and I will take on whatever repercussions, I’ll own that, so that she can go out and do things just like everybody else and not feel as though she’s hindered.”

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker

 

When she got released, it was recommended that we actually have family therapy. They said with Chloe especially, but with all of us there was some chance of post-traumatic stress disorder. Family therapy was myself, my wife, my son who must have been 13 at the time, and Chloe. The four of us have different ways of coping with things. The four of us have different ways of coping with Chloe’s situation. So to sit us in a room and ask us all the same question and expect us to speak up—we didn’t. And if we did, it didn’t cause an argument, but it did cause some tension, which I think our therapist saw fairly quickly, so he disbanded that. He was like, “This is making things worse instead of better, I need to see Chloe, not you guys. If you guys want to go and see somebody else, I can recommend somebody or I can help you with that. I believe the best treatment for Chloe would be one-on-one play therapy.”

She was big into baby dolls, looking after baby dolls, all of that, so she’d take her baby dolls down to his office and they’d play. I’d sit outside and listen and hear the two of them playing. It was like she had her bestie over. Her dolls would be injured, they wouldn’t be injured with a band aid or a little bandage, they’d have tracheotomies or they’d have major scars on the top of their head where they’d had some brain operation, and they all of course had the heart injury scars. To me it was, “Why are her baby dolls so sick? Why can’t they just have a broken leg from falling off the swing?” But as her doctor said, “This is what she knows, and this is what she is trying to come to terms with, and to her, this is normal.” Basically, the majority of the kids on the PICU had tracheotomies, and that was what she was used to seeing, that was normal.

Something he said that really stuck with me was, “No person is supposed to have a concept of their life ending until they reach middle age.” It’s not something teenagers or people in their twenties, even thirties really think, “Well, I’m going to die one day, and what’s going to happen then?” But she had to face that reality when she was six. She’s at a point in her life that she’s reached before she should have.

So she saw her psychiatrist up until a point where he was leaving to go work at a different hospital, and he said to us at that time, “Chloe can continue to see somebody, but in my opinion, I think she’s got all the benefit she’s going to get from it. She may need it when she gets a little older, maybe when she’s a teenager things will arise that she’ll need to go in and look at again, but not where she is at the moment.” One of the main points he said was, “Look at the baby dolls. They’re not as sick as they were.” Before, some of them would die. He said, “None of them die anymore, and they improve, they all improve. There’s less going on with them, they’ll come in and they’re much better. Look, this one had this thing in its throat removed, that’s a big thing.”

 – Jim, father of Chloe, age 13, CPVT

 

Melanie: James knows I’m the one with all the details, and they both know that Mom has this need, because of my training, to do this, so they back off and let Mom take off with it. I’m on the phone with the pediatrician talking about this. He comes to his father knowing his father doesn’t know this much about it and says, “Dad, could I die from this?” and he didn’t mean from the defect because Walt said, “Well yeah” he goes, “No, from the surgery.” I remember Walt saying to him, “Well that’s why Mom’s working on getting you to Children’s because they have such a success rate at fixing hearts.” And that seemed to satisfy him.

Walter: I basically explained on the whole scale, “Yeah, things can happen, but from what they talked about, the operation was fairly straightforward, it wasn’t as complicated as other surgeries they did, and the chances of success are just really, really high” and that seemed to answer him.

Melanie: So I think he came into it feeling like he was going to be okay.

 – Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery

 

Something that I think has been so valuable for us as a family and particularly for David is you get a message from all of this that life is not perfect, there are things that go wrong, there’s stuff that gets broken, but there are solutions to the problems, and there are ways to get things fixed. Every one of these trips to Children’s with David, with the older boys—one son had to go through two surgeries for spinal fusions at Children’s, and the other twin son had a skin issue where he had to go in for a number of surgeries, so we’ve just been back and forth there so many times. I think everyone in the family has come away with the message that if something’s wrong, you fix it. So the stress every time you go to Children’s is obviously a fear of the unknown, there’s things that may go wrong, but the reality is that we feel so fortunate to be able to go to that great hospital and get the care that’s available to fix all these problems. I know that there are so many families that are regretfully dealt cards with problems that can’t be fixed. Fortunately with ours, we have been able to fix every single one of them, and so that’s kind of the spirit that I think carves through some of the stress, every time we walk through that front door.

 – Richard, father of David, age 23, TOF

She’s never felt a shock. She’s come close. That’s one of the great things, it’s monitored. She has a monitor in her bedroom, so if there’s some activity that Dr. Alexander doesn’t like, he calls us in. Immediately I’ll get a phone call, “You need to come in. Nothing major, but we need to take a look at something.” And then he’ll either increase her medication, or he just recently changed her medication and for that she had an overnight stay in the hospital.

His calls are less now. In the earlier days it used to be a little bit more because as he explains to us, “we’re dealing with something that’s individual to each patient, it’s individual to each child.” The severity of it. He’d see a little bit too many arrhythmias that we’d need to address, so we’ll bring her in and we’ll increase the number of beats before a shock.

She’ll get a bit nervous about a shock—she’s like, “What does it feel like?” I tell her, “From what I’ve read, it feels like you get a really hard kick in the back, it’s quick, and sometimes you may pass out beforehand.” They said that her defibrillator’s got a year of battery life left so it will need replacing, the battery will need replacing. It’s something that she knows. She doesn’t mind, because she loves staying in hospitals. She likes the environment of a hospital. She likes to see the other kids.

 – Jim, father of Chloe, age 13, CPVT

 

I haven’t experienced a shock, and neither has Rebecca. Actually, since my defibrillator was put in about ten years ago, it has never recorded anything scary, so I feel really very comfortable with my own health. My heart is kind of enlarged to the point where it probably can’t enlarge anymore and I’m able to function really well with it, and I exercise. But hers, she doesn’t exercise, she walks. She is so young for this disease, it usually doesn’t hit until you’re in your twenties or thirties. I think it’s because she was so athletic, but maybe that’s what brought it out. So she doesn’t exercise, and her defibrillator hasn’t recorded anything scary either, and she’s had it over two years. I’ve had mine replaced once. It’s an eight year battery life. Well it was eight when they put my last one it, maybe it’s longer now.

 – Amy, mother of Rebecca, age 19, ARVD

Alice: It started out being very hard. I remember when he came home six months after his Glenn, we had to start giving him shots to keep him from forming blood clots, and those are twice daily shots, and the needle is like a diabetic needle, but the medicine burns and it’s painful if you ask an adult who’s had them. I do them myself, I did it a couple of times and just me inflicting that pain on him was—Allan had to take that over, and then I felt guilty that I couldn’t do it.

Allan: I mean, when he came home from the hospital after six months, he had an NG tube, and for a good six months, and we probably replaced 100 of them. So we learned to do it ourselves because every single time, almost 2-3 times a week, we’re not going to drive all the way to have them put it in, because then they’re going to want to send it to radiology, and then it’s just going to be a whole process, so we had to learn how to do that.

Alice: That was terrifying at first too. As he’s getting older, he knows how to say “No” now, and he knows how to say “Scared”, and that’s what he says. Some of it, like the infusions, he’s been doing them for a year now, he knows the drill. He knows on Sunday morning he sits in his little chair, he gets to watch TV for two and a half hours, and we do the infusion, and we do things like, “Okay, we’re going to count to ten, and by ten the needle is going to be in, we’re going to have the Band-Aid on.” And I think the structure of knowing what to expect and how to expect it has helped him and I think us doing it makes him feel safer. First we had a nurse come to teach us how to do it, and it’s scary having a stranger. So as much as it pains Allan and I to be the ones to do all these terrible things to him, I think it makes him more comfortable because ultimately he knows we love him and we’re just trying to protect him. His brother even knows how to help with things.

Allan: He’s a mini-therapist.

Alice: He’ll sing him songs, kiss where the shot was, hold his hand for things.

Allan: Helps feeding therapy, and everything else.

Alice: So I think he is starting to get that we’re all here to support him. It’s hard too because he’s developmentally delayed, so he doesn’t have the language to really express to us how he is feeling. “Scared”—he has that word, but that’s it, he can’t elaborate on it or say what helps him or doesn’t help him. He can’t tell us if something hurts really.

Allan: But he understands every single thing that you tell him.

Alice: Yeah, I would say for other parents having to do those types of things, it sucks. It’s scary, you hate to do it, but you get used to it. There’s no sugar coating it, I guess.

 – Alice and Allan, parents of Zach, age 3, Single Ventricle

 

Nick: They taught her how to sit up, and lay in the bed certain ways. She actually coped with pain pretty good.

Shana: Because she likes medicine.

Jade: I don’t like medicine!

Nick: Not anymore

Jade: Some medicine tastes like there’s pee in there.

Nick: You always say that. But it’s just here in the later years that it’s gotten like that. I would say until she was about four, they didn’t have any issues administering anything to her. I can remember coming to the hospital early mornings and not finding her. The nurses had taken her and she was just like doing rounds with them, the nurses and the doctors. She was fine.

 – Nick and Shana, parents of Jade, age 6, Dextrocardia

 

When she was born she was taking Propranolol, she was on it four times a day, that was for two years, and then after that she was on it three times a day until she was five—she’s always had to take some medications. We’ve never had any pushback really in terms of taking medication, it’s just been part of what she needs to do.

She started being somewhat resistant to that last year, before she had her episodes last summer, but now she knows she needs to take her medication. We tried to explain the physiology, the “why it is important to” at that point. She’d never had any problems, any cardiac problems, but so she has had seizures because of hypoglycemia, which is actually caused by the medicine that she’s taking. There was some pushback because of that. Until that summer, the only effect of the medicine that she had experienced was having seizures, so the medicine hadn’t helped her at that point. We just tried to explain how the electrical system works and why she was taking it.

I think our medical backgrounds are helpful in that we understand the biology, the physiology aspect of it, so I understand very well that taking medication consistently is essential and that it’s not okay to miss doses. Talking to other people, sometimes I’m surprised that people don’t really understand how drugs work, so maybe they’re not as consistent as they should be. But the beta blockers inhibiting those receptors, your body is going to naturally grow accustomed to the medication, so if you don’t take your medication, it’s actually worse than never taking it. I think that understanding is helpful.

 – Catharine, mother of Willow, age 8, Long QT Syndrome

 

Chloe is very, very determined. Prior to hospital, our routine every night was I would read to her, and then she would read to me. She was only six, they were children’s books. So when she was making a little bit of recovery, we’re like, “Let’s do that.” So I’m reading a story to her, I give her the book to continue, she picks the book up, opens it upside-down, puts it down and says, “I don’t feel like reading.” She’s just realized at that point that she can no longer read or recognize which way a book is held. Up to that point, she didn’t know she could no longer read. So there was a lot of things that came up afterwards, things like that she couldn’t read, finding words, she would use a different word, she would put a different word in place, and even to this day, you have to give her time when she’s telling you something. If she gets so frustrated with it, she’ll stop telling you. So I’ll ask her a question and she’ll go, “Oh no, it doesn’t matter” and I’ll say, “Well, actually it does, I need to know what the answer is.”

So I let her give me pieces of information as she can. She can’t always string it together, but she can give me snippets of information that then you sort together. So she still has that, and her short term memory- she’s very aware that it’s lacking, and we make a joke about it, I say “You have no short term memory because you had a cardiac arrest, I have no short term memory because I’m old and it’s gone.” So we make lists on everything we do, and as long as we can remember to take the lists with us, we’re good. We try to remember to hang things on the front door if we need to take something.

She takes medication twice a day, morning and night, nighttime medication isn’t a problem, we never ever forget that. Morning medication, I could be driving her to school and all of a sudden it’s, “Oh, sugar, I forgot to give you your medication, let’s drive back and get it.” So we started this thing now that as soon as one of us remembers, we put it on the kitchen table, so that before we leave, we know that the medication has to be taken. So, I play into my own memory loss to encourage her and to let her know that it’s okay. My memory’s not that bad, but I kind of wanted her to know, “Yeah, it’s okay. So you don’t have great short term memory, that’s okay. There’s things you can do to deal with that.”

 – Jim, father of Chloe, age 13, CPVT

 

He’s now on a diuretic, he’s on Coumadin for the rest of his life—it’s just tough. Because he just wanted to be a normal teenager and he wasn’t. He didn’t look good, he’s just constantly taking these meds, and obviously when we first came home I was overwhelmed by, “oh my God, how am I ever going to get to know this.” And he was still young enough that I was dispensing the meds. Now he does his own pill box and takes the pills. He’s at college now, I’d say he probably misses maybe three doses a week, just cause he’s not good about it and it’s an ongoing conversation with his doctor and nurse. Again, now he’s not even a teenager, but he just wants to be a normal person. And other people, they have to take meds, they take them in the morning, they take them in the evening, their more conscious of the fact, “I’ve gotta take these meds.” Gabriel, he doesn’t take them and then he says, “well I’m fine,” but then sometimes, he doesn’t take the Lasix and then the next day he feels like all puffy and it’s because he didn’t take it.

When he first went back to school after that surgery, he was taking the diuretic twice a day, morning and afternoon and it was a disaster because he had to go pee every like 15 minutes. So he’d excuse himself out of class, so he was missing class time. I talked to his doctor about him just taking a double dose in the afternoon when he got home, so that’s what he does. But even then, this past week, when he goes out with his friends, he doesn’t want to go out with them and then have to go pee. They want to go out to a movie, they want to go out to dinner, they want to go to the mall, and the last thing he wants it to have to go find the bathroom in the mall every 20 minutes. So sometimes he comes home at 11 o’clock, and then he takes the diuretics or he skips it, so it’s not good.

But the Coumadin is okay, because he’s got his own home monitor, so he tests his own blood every couple of weeks. I usually have to harass him because he’ll forget—if they tell him to do it on a Monday, he’ll usually get around to it by Wednesday. But if they have to tweak the dose, they do, that part has worked okay. It’s really more getting him to take the pills and then just the hassle of the diuretics. His doctor has tried to scale back the dose, and it just hasn’t worked. It just builds up the fluid. It just kind of stinks. It’s one thing when your old to have to take pills, a lot of old people, God bless them, just don’t. How many teenagers, early 20’s kids do you know that have to use a pill box filled with like 9 different meds. It just really stinks.

 – Louisa, mother of Gabriel, age 20, HLHS

With her fourth surgery, it was the first time that pain was ever a big issue for her. Being in the hospital, seeing her in pain, that was really hard, because you would do anything to take their pain away. You could tell she wouldn’t want to move, she wouldn’t want to get out of bed to walk, you could see it on her face if she moved remotely she would grimace. We would try the Tylenol and the Motrin first, and I would try distracting her, but you could just tell by her not wanting to move and by her face that she was in pain, so it was the first time we ever had to say “Hey can she please have something stronger?” So then they would give her the narcotic for pain, and within like a half an hour her whole mood would change. She’d be willing to play a game with you again, she’d be willing to go to the activity room. But prior to that she didn’t want to engage she didn’t want to interact when I brought her brother and sister in, she didn’t even want to talk to them, she would just wasn’t herself. But she wouldn’t ever say, “Mom it hurts” but you could tell in her face and she didn’t even want to move an iota, she didn’t want you to sit on the bed, she just didn’t want to be moved at all until the pain felt better. And then when it did, she would be great and want to move around and do things.

So that was the first time we had to come home and give her a narcotic for pain, which even as a nurse was very scary to me because she’s just, my little baby and when she’s on narcotics I know she’s not going to feel great, it’s going to constipate her, but I need her to be able to be happy and not angry and want to play and walk and talk. But even at home she only needed it for a couple of days and it was mostly at bed time to help her sleep or when she first woke up in the morning. Then it was like a switch or something, and it just didn’t hurt her as much anymore, and the Tylenol and the Motrin were enough or she wouldn’t need it at all.

Since that surgery she tripped over her soccer ball and broke her clavicle and she had an umbilical hernia repair. She is the toughest kid in the whole world. I mean her clavicle was broken in half and she’s not crying, she’s just like “Mom, something’s not right.” That was really painful, super painful. She had a harder time sleeping after a broken clavicle than she did coming home from the hospital after her heart surgery. With the hernia repair she complained of pain then too. As you got older you’re more in tune to pain and not wanting to feel pain, and you know she was definitely more vocal then about, “My belly hurts” and being able to tell us that she was having pain. But she’s still tougher than any one of my other children, and falls down and scrapes both of her knees open bleeding and she’ll get back out and be aggravated that she tripped. She doesn’t ‘crybaby’ about anything. She’s very stoic.

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve

Her scar is something, for me, that’s such a badge of honor, I honestly feel that way. Before her surgery I thought, “Oh my Gosh, look at her perfect beautiful little chest now, there’s going to be a scar there.” I don’t feel that way at all anymore. I sent a picture around to people afterwards and someone just responded “Brave heart.” And my cousin said, “That is so cool. I love scars, they tell such a story.” And I really do think it’s such a badge of her strength. It’s going to be something that she can reflect back on that’s tangible. It may fade, but it won’t ever totally disappear, she can always look down and say “I did that, I can do this” whatever that “this” may be, and how brave she was when she was just two years old.

She, you know, she points to it happily, from her—because she’s always used the word “boo” for a boo-boo, so from day one it was “her beautiful boo,” and it still is. It’s just this very cool thing. I just—I really—to me, I’m so proud of it. I’m so proud of her, it is such a sign of her resilience and strength and courage as just this tiny little person.

 – Jessica, mother of Avery, age 2, ASD

 

So we bought the book “Zip-line,” it was written by a dad, a Boston Children’s dad. It’s called “Zip-line” and it’s about a little girl. It rhymes, it’s very age appropriate, it’s not scary. It talks about how she was very brave. Well, so we started reading that to Emily before Elizabeth’s surgery, because we didn’t want her to be scared when she saw the incision. So we started reading it originally to Emily and now we read it to Elizabeth, and I donated the book to the preschool because they read books to them, and if three of them are there with open heart scars, the other kids need to know. So now she talks about her zip-line, and it’s kind of funny because she’s like “My zip line can get wet, I’m so brave.” Because she sees me at the pool and she’s like “You don’t have a zip-line, I have a zip-line.” She’s proud of it. And I want her to be proud of it. I think about that. Like, the first time she ever takes her shirt off in front of someone, I want her to be really proud of it. It’s almost like a beauty mark.

 – Anna, mother of Elizabeth, age 2, VSD

 

After her second surgery, I remember it caught me totally off guard, one girl watching her dance class had seen Amelia in her leotard and had seen the scar and it still had the dermabond, and it looked kind of gross, and she pointed at Amelia and was like “Ew! What’s that on your chest?” And I remember Amelia looking at me with fear in her eyes, and I was at a loss for words because it was just so random. It took me a second to pull myself together and I said, “Oh, that’s Amelia’s bravery scar. A doctor had to fix boo boos on her heart, and that’s what he gave her. He gave her this great, great bravery line that shows how brave she is for what she’s been through.” Then the little girl was kind of like, “Oh, wow!” and that was it. Some of the girls in her classroom weren’t as blunt and just said, “Oh, is that from your surgery?” Because the teachers had shared with our approval that she was going to be out, and that she had some problems with her heart, and they made her cards and sent them up to the hospital and gifts had come and been delivered so she felt supported by all her friends and stuff while we were at the hospital. When we came home she got more surprises and stuff like that. But luckily, there’s not been a lot of attention to her chest, to the line. At this point it kind of blends in, it’s hard to see. She doesn’t wear a lot of shirts that expose the area.

When she gets upset, or sometimes she’ll put on a shirt where her scar will show—because after her second surgery, that was bothersome to her, that you could see the scar. Especially when it was more fresh and more noticeable, body image kind of came into play. That’s when I pushed and encouraged like, “That’s your bravery scar. None of the other girls in your classroom have that.” And I was like, “You were this lucky girl that was picked to have this heart and you had a lot wrong with your heart, but the doctors fixed it, and now you’re healthy, and that’s your scar to let everybody know how brave you are.” And slowly with time as it’s healed and stuff, she’s accepted it, and it’s nothing now to her, which is nice. And I said “If you didn’t have those surgeries, you couldn’t play soccer” so that’s how we kind of turn it around again and make it a positive thing that she’s been through.

 – Roxanne, mother of Amelia, age 7, Dextrocardia

 

I think medicine’s very important, but just realizing there’s also something bigger, and somebody’s taking care of Alexandra, that’s been really helpful for us. I love this story in the Old Testament, they used to put these things called “Stones of remembrance,” and so at the parting of the Red Sea, when they went through the Red Sea, and how God provided, they put stones of remembrance, and so every time we go in and Alexandra has x-rays, you see all these scars on her body, and I think of those as her stones of remembrance, of how God has preserved her life. It’s interesting because God always says that you need a new heart, and Alexandra has a new heart. So I think there’s all these great tangible things about our faith that come through with the story, and that we’ve been able to tell our children.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker

 

[At ICD/Pacemaker Camp] They have scar buddies, they call them scar buddies, and they show their scars to each other, and they’re proud of their scars. It’s not something they want to cover up. A big thing was when Chloe met a girl, she was Miss Massachusetts at one time, and she had an ICD. She had a problem with her ICD so they had to replace it, and she has quite a large scar, and she said that when she was in the beauty pageant, she didn’t cover it because she’s proud of it, it’s who she is. And she told this to Chloe, so Chloe is happy with her scar, it doesn’t affect her.

 – Jim, father of Chloe, age 13, CPVT

Visiting the doctor, it’s only become a problem lately, and I think that’s because now she’s old enough that she understands that she doesn’t want to be poked at or touched. Prior to her surgery, she was young enough that by hospital policy she had to be sedated. That made it really easy. It sucked for us but when you knock out a baby it’s a heck of a lot easier. So now she’s too old and she had an appointment a couple of weeks ago and it was just a disaster. She was screaming and wanting to run away, like “No! No!” She’s two, she doesn’t want to be doing that! So I’m not sure what we’re going to do next time, but we’ll see.

 – Leslie, mother of Margaret, age 2, VSD

 

She skips into Dr. Geggel and the nurse Maureen, and she’s never hesitant and she just gets there and she knows that she needs a height and weight and she takes her shoes off and they need an EKG and they put the stickers on and you know, “Oh, I have to have an Echo” and she lifts her arm up and turns on her side. She just does everything that she needs to do, and never does it with a single complaint. It’s never been an issue. My son—this summer he needed a cardiac workup, and so he needed an echo and an EKG and they were putting the stickers on him and taking them off and he was like “Ow, ow, ow” and Isabelle said, “Chris, I had that done like 100 times!” It’s like, “Seriously! You’re ten, stop it!”

 – Erica, mother of Isabelle, age 5, Anomalous Aortic Valve

 

She had a lot more questions about the more recent surgery and the worst thing that she hates is needles and having to have bloodwork done. We’re open with her, I don’t tell her a lot of times ahead of time what’s going to happen. We honestly didn’t tell her about the surgery until a week before we had to go up. We talked to her the day before to explain the pre-op care and the pre-op appointments. She knows the little chest x-rays where they take a picture of her heart, she wears the lead apron to protect her, so she knows that that’s something that’s okay and doesn’t hurt her. She knows the echo is the jelly on her chest and she’s fine with that.

The bloodwork is where we get into a little bit of difficulty. She’s never had to be restrained, typically she sits on my lap and I hold her kind of in a bear hug. She sits there and does it, she’s not happy, she normally cries through it, but she gets it done. I explain to her going into it why she needs to have something done, that it’s very important and I say to her, “I would never make you do something that I didn’t feel was important or that wasn’t important to take care of your heart.” She kind of accepts it, she cries, but it’s nothing ever worse than that. We’re always very open with her as much as we can be without scaring her.

The scariest thing that she’s been through was when she was awake and they extubated her. I could see the fear in her eyes. I remember in the ICU when they extubated her, she was awake and she was fighting the sedation, the doctor at first said, “We need you to step out” and I said, “I can’t step out, she needs to have me there, I’ll be able to calm her.” I never go in playing the nurse card, I like to just be the mom, and I remember saying to him, “She’s definitely getting upset,” and they were at the point where they were going to have to tie her arms down because she was trying to take the tube out, and I said “I’m a nurse, I know what this entails, please let me stay, I can calm her down.” He finally relinquished and I looked at her and I was like, “Amelia, you need to calm down, you’re going to do this quickly, mom is going to be right here.” So they did it and I remember the doctors saying, “Wow, I would have never expected her to react the way she did to your voice, and just to be able to calm her and get her through it.” She was more fearful when they were going to take the chest tubes out, she got very emotional and I again said, “it’s nothing that they can’t not do.” So she remembers those sorts of things, so going up to a visit with Dr. Lang is like “Do I have to get the needle?” or “Are they putting anything in and then they’ll have to take anything out?” because she’s thinking back to the tubes and things like that. So I feel like the more open we are, the more relaxed she is and knows what it’s going to entail.

 – Roxanne, mother of Amelia, age 7, Dextrocardia

 

After that arrhythmia episode last summer, she had a very hard time going to sleep for the month after that because the feeling of going to sleep was like the feeling of when she lost consciousness. So she would often get in bed fine, but then as she was starting to fall asleep she would have difficulty. We actually had her go to a therapist that Dr. Alexander recommended, and she really didn’t like talking to the doctor about this. So I told her, “This doctor is here to help you deal with these feelings and to help you be able to go to sleep by yourself, on your own without crying or being worried that you’re going to die.” Every night she would cry out. So she said, “Well, if I sleep by myself can I stop going to the psychologist?” And that was it! I mean to some degree I think she has suppressed her anxiety because she doesn’t want to talk about it. I don’t know that that’s really the best outcome and the best way to deal with it, but I think fully coming to terms with your own mortality is a challenge for anyone, let alone someone who is only eight years old.

 – Catharine, mother of Willow, age 8, Long QT Syndrome

 

For her it’s the stickers. She is anxious until it’s communicated with whoever is doing it that she wants to take the stickers off. I think she really, really wants to do that. I’d say, “there’s a lot of things that I don’t like to do too, but this is just part of what we have to do, and we don’t have to like it, but we have to do it.” And then I usually say, “But we’ll go get a treat or do something afterwards, and do you want to bring a stuffed animal? Is there anything you want to bring with you?” And so she often brings her Red Sox stuffed animal doggie with her and we talk about it. I don’t really talk about it until the day before, so she doesn’t have all this time worrying about it because usually it’s scheduled appointments.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker

 

He went in for a cath when he was about six. They went to put an IV in, and he absolutely wanted no part of it. His anesthesiologist was wonderful with him. He actually brought everything that you use to do the IV, and he had Austin be the doctor and do his arm first. I’ve got pictures there of the doctor with his arm, Austin’s tying the blue rubber band around it. That helped. Another time, I bought a teddy bear and brought it back up to him, and one of the IV nurses, she showed Austin how she put the whole PICC line, if you will, on the teddy bear’s arm, and gave Austin empty syringes. She showed him how to flush it, how to put the medicine in, and the little bear, he still sleeps with every night. Picc the bear, he goes everywhere with him. He goes, “We have to take Picc!”

 – Grace, mother of Austin, age 10, TOF