I went and talked to the director when I went to look at the school, and she said that surprisingly they’ve had several cardiac kids attend, and some that went to Boston for treatment too. And again, it’s more common than I would have known. The only thing was that this particular school can’t administer his medicine and he gets medication three times a day. So his cardiologist just said we have to alter the times that we give it to him.

 – Lindsay, mother of Brian, age 2, Heterotaxy


The school knew her history because when she went into kindergarten we had to get her a physical, and that had her entire cardiac history on it. And when they met with me at the very end of the school year, finally after all the testing and after the school did all their testing, they sat down with me and they said, “Some areas she scored really high, and in other areas she scored really low.” So sometimes they would take those averages and it might mean she didn’t qualify for services, but taking her history and taking the specific areas where she was struggling, they said the better approach for Isabelle was to pull her out for all of these services and help her, which I think if they didn’t look at her history and they only looked at the numbers, then they may not have given her an IEP this year. I thought that was really great because I was nervous having just heard from other parents that they had a hard time getting an IEP in school. I thought “Oh gosh, if I can’t get it, I’ll do whatever I can, I’ll tutor her, I’ll do all the things that I can.” But I was really lucky in the school that she’s in, they were really great about it.

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


Shana: Well she goes to grade two, so the first two years were pretty hard, you know, they tell you that she’s going to lack in certain departments. She has to work a little harder than everybody else, she can’t take part in sports.

Jade: Well, I did.

Shana: Well this year is the first year she actually took part in race. She works a lot with the teachers, but school’s okay. Someone with her condition, they’re not going to be as advanced as a normal child her age, but—

Nick: We got lucky. I think her only issue is just because she was a late baby, so she’s probably the youngest in her class, and everybody’s turning a little older she’s just starting her year, so that’s the only hiccup, which is not anything to do with the condition. What we were prepared for, like I said when we first got here, sitting down with somebody who explained to us what is to be expected in years to come, the possibilities of this or she could be a little underdeveloped but eventually she’ll catch up and—

Shana: She milked it in grade one. And when I say milked it, the slightest pain and the teacher’s like, “Okay Jade, you don’t got to sit a test, just sit down, put your head down.”

Nick: She learned how to use it.

Shana: Yeah, she used it against us. “Oh, I can’t walk this far, my heart is upside-down.” She milked it.

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


I was really apprehensive about having her go to school, because there’s 25 kids in a classroom, and then they go to the different special classes—art, music, and then during lunch they’re really just supervised by the lunch aides. During recess there’s 80 kids out on the playground at once. So I was concerned about that. Her direct teacher was already CPR trained, so that was reassuring, but I was concerned about the fact that she would be at school in these different places—clearly she didn’t need someone assigned, she didn’t need a one-on-one aide—but she needed to have the adults in the building prepared for a potential emergency. The school already had an AED on site, and in years prior the nurse always had a conversation with her teacher and then the gym teacher, but hadn’t extended it out to include every adult that she might come in contact with. I really credit the principal for engaging the whole staff, the school and at this point, every adult in the building knows what she looks like and has seen her picture and the fire department came out and did CPR training, which makes me much more reassured about having her at school.

Her IEP, we just set up a set of instructions to deal with what would happen, and a protocol for if there’s a substitute in the class what is the procedure and you know the emergency plan for her.

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


He has some executive functioning delays, so attention to tasks and following multiple sets of directions have been challenging for him. We had quite a challenge trying to get some services for him because he’s smart and capable, and he’s in third grade reading at a sixth grade level. He’s able to compute and understand math, but for him to organize his thoughts and get things down on paper is so tremendously difficult. A lot of that is a result of surgeries, lack of oxygen, that type of thing. It was very challenging for us to get him special education help.

Two years ago we took advantage of the testing that the Cardiac Neurodevelopmental team did, and that was like a lifesaver for us. Because of their assessments and the data of other children with HLHS and how they’ve been impacted by the surgeries, we were able to take all that information that they gave us, and say, “Hey, you don’t understand children with congenital heart defects, especially HLHS, because it’s so rare.” We needed to take the stuff that we were given by the neurodevelopmental team and educate the educators in the school system. Fortunately, through that and through testing with the school, we were able to qualify for the services that he needs, and now he gets services for executive functioning to help with organization. He’s still challenged, making sure that he gets everything that he needs, but we’re in a much better place now that things have fallen into place.

I am a special educator, so I understand that yes, there’s some disabilities that are more abundant than others, and you have a better understanding of some more than others. Just like every doctor doesn’t have an excellent understanding of every medical condition out there, I think that because HLHS is so rare, many special educators think, “It’s a heart defect how does that affect him with academics?” I think that people truly didn’t understand how that could affect him educationally. People think “Oh, no, he’ll be fine,” but nope! So having that resource available and actually hearing, “Here’s a study that’s been done by the National Institutes of Health,” it’s something that I wouldn’t have access to really, to be able to show that, and to be able to prove, that on top of his comprehensive testing. So it really helped because it was in black and white. There was research. Overall, there wasn’t knowledge there about it before, so it was like, “Let’s wait and see, let’s wait and see.”…Was it hard for me because I worked in the same school system and a lot of people were calling me up, my friends that I worked with? Yes, it was challenging. But, I think any parent has to advocate for their kid and not worry about conflict or educators not being happy with your thoughts or knowledge or opinions about what’s best for your child.

 – Abigail, mother of Johnny, age 9, HLHS


The only incident we had at school was right after she started kindergarten when the nurse over-medicated her. She was on a liquid medication at that point, and she was supposed to get one mL of the medicine in the afternoon and the nurse accidentally gave her one tablespoon. We ended up taking her to the hospital where she was given an IV and they watched her for about six or seven hours to make sure her blood pressure didn’t go too low. We’ve never had an incident that was related to her heart doing something or her feeling a certain way or anything like that, it was purely this mistake that the nurse made.

Her elementary school did the CPR training on their own. I met with the principal before she started in kindergarten and her new teacher was brought in and so was the gym teacher and the nurse, so we had a big meeting and I explained, I brought the book that the Children’s Cardiomyopathy Foundation has put out, it’s called “Cardio What?” it’s a kids book that explains cardiomyopathy. At that point, the principal contacted the regional nurse as well. They took it very seriously which I was really happy with. The principal worked with the district nurse to get the extra AEDs for the elementary school. Middle school was a little harder though.

When I first met with the middle school principal, it’s a charter school, so it’s a lottery, and once you find out your number’s been drawn, you have 24 hours to come to the school for the child to start. It couldn’t be 24 hours, so right away I set up a meeting with the principal to explain the heart condition and said, “I want to make sure that the school is appropriate and has an policy in place before I’ll let her come here.” So again the principal brought in the nurse, her teacher, the gym teacher, but the principal at that point was very uncomfortable with it and she actually told me she’d prefer my daughter not attend her school until she had an implantable defibrillator, because she didn’t think “public school was the place for her” was the way she put it. I said, “Well, clearly I haven’t homeschooled my child since she was in kindergarten, she’s been in public school the whole time. Chances are you have another student here right now with this condition, so you need to have this policy in place regardless of my daughter. It’s just with my daughter you know she has it, whereas this other kid may not know themselves that they have it, but it’s common enough that it’s probably here already, or it has been.”

I had to fight a little bit after the principal said she didn’t think my daughter belonged in public school, because I was angry. But then the principal met with the district nurse again, she met with her nurse and they put together a plan. They had a full three weeks to get people trained and to make sure that they had a plan that they were comfortable with and I was comfortable with. I know the first year was tough for them, because the principal has talked with me since and has said, “You know, I was really nervous that first year with her here.” And then she’s such a normal kid that I think they just didn’t expect that. They didn’t expect her to behave and act and in every way appear to be just like everybody else. So I think it eased their concerns a bit when they realized she really can do almost anything everyone else can do, and the things that she can’t do are limited to a few exercises in gym.

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


You have to make those school administrators and his teachers and his lunch lady and his gym teacher, you have to make them a partner in this disease because it’s not like the kid has a sprained ankle or he’s got a cold or a cough, his oxygen saturation was going down. I remember, there was questions of whether or not we wanted to have a sat monitor at our house, or a sat monitor at his school, and we all decided that no, that would probably just create a panic frankly if his sats got really low because there were periods of time when his sats were in the 60s. So you just kind of hold your breath and you get through it.

They told us he could have learning deficiencies and problems, he has—he had a plan. He didn’t do terrific in school, he didn’t tank at school, he was kind of middle of the road, but we certainly put in place a learning plan for him when he was in elementary through high school. He did well enough that he was accepted to a nice private college, he’s there now. I would tell you that his first year was tough, but it’s tough for a lot of people, my first year, I tanked it because there’s too much going on. So now he’s a B minus student, but he absolutely just loves the college experience and he’s figured it out.

 – Bill, father of Jake, age 21, HLHS