We had to work with the school’s policies. We can’t change their policies, for example, you can go to school with a clear runny nose because the school says a clear runny nose isn’t contagious, only cloudy ones, which if you ask any immunologist, is not true, but his classmates were allowed to come to school if they had a runny nose. So I had to talk to his classmates’ moms and say, “Listen, if you’re sending Johnny with a runny nose today, just let me know, I will keep my kids home.”
And anything Wes is exposed to, it’s basically like exposing it to Zach, so Wes’s had to live with the same restrictions. When I know someone’s sick, I don’t send them to school. We had an issue come up this year—we didn’t know when we enrolled them in school, but we found out in December that one of their classmates was not vaccinated, for religious reasons. And then we had the measles outbreak, and there was even one in the county next to us, so I pulled them out for six weeks until we met with all his teams—his cardiac team, his immunology team, and they did a lot of blood work and a lot of discussion and then they finally said, “You know what, he’s getting protection from the immunoglobulins, he’s been doing so well in school, the risks are minimal compared to the benefits he’s getting.” So in February we sent him back to school.
– Alice, mother of Zach, age 3, Single Ventricle
She goes to school every day. Last year the kindergarten teacher, in the very beginning of the year, was very concerned about her not being where she should have been, and I didn’t realize that at all because I never got any alerts in preschool, but she did get pulled out in preschool for a length of time after both surgeries. I kind of put her in a bubble before the surgeries to not get her sick before I knew we were having surgery, and then she needed however many weeks after surgery to not go to school. So she missed a good chunk of time both years, but everybody said “She’ll catch up, don’t worry” and she never missed a milestone developmentally growing up.
She was very funny, sassy, humorous, like she keeps up with the other kids. She’s the youngest, but she acts like she’s the oldest, so I didn’t realize that she was behind when she entered kindergarten, other than, yes maybe she couldn’t recognize all of her letters of the alphabet, but other friends’ kids were the same thing. And then when she went to kindergarten, her teacher told me right away that her retention wasn’t where it should be, and she was having trouble with her letters, and counting and ten frames and thought that maybe she might need to have some additional testing to just see where her deficits are. So then last year in kindergarten, the school ended up evaluating her as well as I brought her to Children’s to have her tested.
– Erica, mother of Isabelle, age 5, Anomalous Aortic Valve
He’s done really good actually. Even with school, you would assume he would be so sick being around all these kids and in public school, but he really hasn’t. I think balancing good hand washing and sheltering him a bit, but still allowing him to be around other kids and get sick and touch germs, it’s actually been good. I think it’s helped build his immune system, and he’s done better than we expected him to do, so that’s good.
– Amanda, Mother of Carson, age 5, Heterotaxy
Last summer she had these events that precipitated her having surgery and I made the decision that the school needed to be very aware of what had happened. So in conversation with the principal, the principal actually made every adult in the building aware and he showed a picture of her and explained what could potentially happen, and they actually had the fire department come in and they did CPR training for every adult in the building. I think initially she felt uncomfortable about the fact that everybody knew, but the principal came and visited her in the hospital after she had her procedures and she was glad that he came to visit.
She ended up missing a week of school because of the surgery, so all of her classmates knew that she was out of school because she was in the hospital. Her friends and their parents knew a little bit more—I think third graders have kind of a short memory. Socially, it’s not really something that comes up a lot. They did have a fundraiser at the school that was a Fun Run, and I think they were good about having it be just, go at your own speed and make it fun. She is aware that she can’t push herself and that she can’t run as fast as a lot of other kids.
– Catharine, mother of Willow, age 8, Long QT Syndrome
Her grade school bought an extra AED for her, so it stayed in her class with her and it went to gym and it went to music and it went to art and it went everywhere she went, so it was different than the one they just had in the hallway at the school. When she was young, it almost made her feel special I think that she had this other thing, because she would want to carry it to gym and she would want to carry it to all these other places, because she saw it as being her device, and when kids are that age, anything they can do to help and to stand out is what they want. Then they get into middle school and the last thing they want is to stand out.
– Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker
She can’t spell. She can learn how to spell a word, and then the next day she doesn’t know how to spell it. Spelling tests, they don’t do them so much anymore, but when she was in earlier grades they’d do spelling tests, so we’d learn the word, and then she’d go to school and she wouldn’t do too bad, but if you were to test her the following day, she’d get them all wrong. Even words that are used a lot, she still can’t spell. School is like, “It doesn’t matter, there’s spellcheck” It does, but, you know. Writing isn’t particularly difficult for her, it’s just the spelling. She has a device, like a little iPad thing that she can use in class to type with, so she doesn’t have to write, she can type.
She’s reasonably good at math—she gets As and Bs in math, and the neuropsychologist was surprised that her math skills were so high, because one of the major things that’s affected by it is math. But Chloe’s known since she first started going back to school that she has to work three times as hard as anybody else to be able to function in class. And she’s very aware of that fact, and she does the work to get her grades up.
She’s not pulled out for any special classes, she’s just monitored. One of the things I said to the school was, “I don’t want her graded a different way than the kid sitting next to her, because that doesn’t tell us anything. That just tells us you’re a nice person and you’re giving her a nice grade. I want to know what her actual grade is, because if we know that she’s failing in a subject, we can address that. If we’re under the illusion that she’s doing okay in something, it doesn’t help us. So it’s not that we don’t care what the report card says, we do care, but we want it to be an honest report card.” And they listened.
– Jim, father of Chloe, age 13, CPVT
Jake’s heart impacted him in school in three big things. One was exhaustion. I think he was always a very tired kid, the nursery school teacher used to joke with me that he’d fall asleep during circle time more than once, she said he would just go to sleep. Getting through the school day was just utterly exhausting to him.
The other thing that was really hard is that he developed very chronic pneumonias, sinus infections, ear infections, and asthma from after that second surgery all the way through high school. He missed a lot of school and even when he was in school I think a lot of the time he was just feeling really crappy, and when he was on asthma meds, that added to feeling crappy because they just make you feel crappy.
And the third way that school has really been hard for him is academics. He definitely struggles academically. So with all three of those things, I think we’ve tried to sort of explain to him why it is the way it is and there have been periods of time where he’s been more frustrated about it.
– Diane, mother of Jake, age 21, HLHS
Courtney: Probably in Junior year, maybe Sophomore year in high school—he was definitely having processing issues. We weren’t really sure what was going on with his abilities, and we sent him to the same psychologist that his brother had seen to have all the tests done. And he came out and said, “He scores this on this and this on this and he definitely has an issue with the processing.” And our cardiologist told us that many of these children who have been on the heart/lung machines, something happens and it does manifest itself in strange ways, processing can be one of them. David was definitely affected by this I can say. So we had to take a while to digest all that.
Richard: But from an academic standpoint, that resulted in his getting the extra time.
Courtney: The extra time, he got like almost perfect scores on his SATs because of it. He’s a smart kid but he still needs the extra time, and he doesn’t take the extra time in college even though he should of course. He’s a history major right now. So that helped us to unravel the processing mystery. And I think it made him feel a lot better, honestly—when you know you know something but it’s coming out the wrong way.
– Courtney and Richard, parents of David, age 23, TOF