His brother started walking first, Brian was a little bit more delayed because he was sedated and in an ICU bed for two months while his brother was growing and healthy. But we had a physical therapist that came to the house and worked with him, which she said he didn’t really need, and it got to the point where she was just coming over to play with him. Once he started walking, we stopped the services. Now he’s pretty much all the way there. And some things are way more advanced than his brother. He talks way more than his brother does. He’s all caught up and, in fact, I’ve never seen a kid bounce a ball the way he does, and I’m not just saying that because I’m his parent. Danny has no coordination trying to throw this ball and Brian is addicted, his first word was “ball”, he has to sleep with balls, he has to be with balls all the time. Any kind, big, small, bouncy, he does them all. So, he’s great. I don’t even know how he got into that.

 – Lindsay, mother of Brian, age 2, Heterotaxy


Elizabeth was eight months old and she had really bad gas, so our pediatrician referred us to a GI doc up in Cincinnati. We saw this guy who was very austere. Elizabeth was completely naked, and at eight months she was the size of a three month old, she was really tiny, still kind of dusty looking, still kind of blue-ish—you could tell she was a heart baby. He completely disrobed her, looked at her whole body and then he pointed out, which made me so mad at the appointment, he’s like “She’s eight months old and she’s lying flat.” I guess I was so busy just trying to keep her okay, that I hadn’t thought about the fact that she was eight months old and she was not sitting up. She wasn’t sitting up, she wasn’t tripod-ing, she wasn’t making any effort to crawl, totally flat on her back. So he’s like “We need to talk about the developmental. Forget the gas. Maybe cut dairy out of your diet, but we need to talk about the developmental delays.”

So we drove home, I was so upset, like “one more thing for Elizabeth.” I just felt so bad. I felt guilty that I hadn’t really paid attention to that. So I called a friend and got a recommendation for physical therapy, a physical therapist here who would come to my house. Because we were in the middle of cold and flu season, I was like “I’m not taking her out to a physical therapy practice right now and getting RSV.” Well this lady was awesome. She came to our house, and one of her partners was a speech therapist, she came to our house. They each came to our house once a week. And we have good health insurance coverage, but we still only had like 20 visits for each therapy covered by them, and that was not going to cut it.

So I called one day to make the appointment and the receptionist said, “Has anyone told you about Fresh Steps?” And I didn’t know what that was. It’s a program from the state and they bill the insurance. When you run out of benefits, you pay the state on a sliding scale, but no matter how much you make, you still would only pay 100 dollars a month to get the care you need until age three. So they got us enrolled in First Steps, and we went through all the interviews where they have to have a social worker come to the house, and someone who does an assessment for skill. We did all those, got us in the program, and then we worked with Elizabeth’s therapists until probably nine months ago. But they got her crawling and walking and doing the things that she needed to be doing that didn’t really have anything to do with her heart, but were more just because she was also a preemie. And she was weak because of her heart. They were also a really good support for me, because I knew that each one of them came once a week, and it was great to have their input. They’re not cardiologists but to have their input and encouragement was awesome.

 – Anna, mother of Elizabeth, age 2, VSD


It didn’t occur to me when she was little—she would do arts and crafts for a little while, then she’d be totally disinterested and want to do something else, and was that because she had a poor grip and I didn’t realize it? Or was it because she was disinterested in crafts? I felt a lot of guilt, like “Maybe I should have noticed that when she wasn’t really interested in doing things that her brother and sister liked to do, but everybody’s different.” But in the Cardiac Neurodevelopment evaluation, she clearly had an immature grasp and it affected her writing and her coloring and her interest to do those things. So again, we worked really hard all summer to try to do things. Then the occupational therapist at school gave me all these repetitive exercises to do with her for the summer. Even though they weren’t all the same they were still task-oriented and she still had to do them a lot. By the fourth week in the summer, she actually said to me, “Why do I have to do this, I just want to die!” and I was like, “Isabelle! Knock it off!” That to me was like, “Okay, I need to change it, she’s getting upset.”

So we played games like rolling up paper into a ball and playing basketball—things to try to help her strength but not let her know we were doing the exercises. That made a huge difference. I think her kindergarten teacher also took an interest in Isabelle and she tutored her all summer and made it fun. Isabelle could have been aggravated and frustrated and not wanting to do it like she was with those OT exercises, but her teacher made that difference for her and she still loved learning, so that’s really good. All it takes is that one person, who may not even really know it, that makes all the difference. She picked up on her issue, she advocated for her, she told me what I needed to try to do, and then she continued to help her all summer.

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


She did have some speech delays, and when she was in pre-k we ended up getting her help with speech, and they said, “Well, often kids who have surgeries at the beginning of their lives are either delayed in occupational therapy or speech.” So we did speech and then she did do gymnastics at that point to kind of help with that. But for the most part, she seems to really be thriving. She loves school, she’s a happy kid, she’s kind of quirky and silly, and she loves Olaf from Frozen. I don’t feel like we’ve had anything that’s been so major. I mean, the pneumonia we were worried about, but still they said, “Okay, this is what happened, this is what we’re going to do, and we’re going to take care of it and this is how we’re going to do it.”

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