It didn’t really occur to me that with multiple surgeries using anesthesia and multiple times on the heart-lung bypass that they really can have issues with learning.


Maggie is being followed by the Cardiac Neurodevelopment team, they see her once a year. She meets with a psychiatrist and some variety of child development specialists. Dr. Rollins is the neurologist who she has seen twice, they are wonderful. I think it’s rare that the parent gets the ability to have a whole team of professionals be like, “No, your kid is okay, this is the way they’re supposed to be acting.” They’ve been great. It’s very limited, we only come to Boston once a year, but it’s nice to have that additional person, that additional medical professional, telling you that, “yes, in spite of the fact that your daughter has these cardiac defects and that there can be intellectual delays, she’s fine.” It’s wonderful to just have that additional resource.

They do pretty straightforward testing. It’s in the morning and they’re making sure she’s meeting her milestones and that she’s walking and she’s speaking the way she should. They look at things that I wouldn’t necessarily look at. Margaret’s in early intervention as well, which we have been thrilled with, it’s the greatest thing ever. It’s offered to us and she was recommended to do it, so we do it. She’s seen a physical therapist even though she probably doesn’t really need it, and she’s in a play group which she loves. It takes a village, and that’s true—and we have a bigger village than most people. So that’s really what it is.

 – Leslie, mother of Margaret, age 2, VSD


Alice: We got in touch with the Cardiac Neurodevelopment Program once we knew we were coming to Boston for the second opinion for Zach’s cardiac status. He started having more seizures—he has seizures as part of his stroke, but he went from having a few to having 70 a day, and we weren’t getting anywhere back home. We touched base with the Neurology department, and then we got in touch with Dr. Newburger. And once I told her the short version of Zach’s surgery she said, “Oh, yes, definitely cardiac neurodevelopment team, you need to see them.”

Dr. Ware and Dr. Rollins are who we follow up with. At first, Zach was two when we came up here. They evaluated him and then gave us some things that we could be doing at home, make sure we had the proper early intervention in place. Then last year when we came, they did a whole psycho-educational evaluation of Zach, because he was turning three and he would be graduating from early intervention in our home state. So Dr. Ware knew that was happening and she organized for him to have the assessment so that we could use it as a tool when we went to his first IEP (Individualized Education Plan) meeting. We did it so we would have all this data on how he’s doing and what would be best to help him. It was a great thing to bring to the meeting because it showed the school, “These are the things that he really needs in place to be successful in this environment.” Throughout the year, I’ve emailed the CNP team. You might think with us being in the South, what’s the point in seeing a team like that up here, but they’ve been really great about following up through email, and then when we’re here we see them.

The last time he was tested, Dr. Ware noticed  that he was wriggling around in his chair and she’s like, “What kind of chair does he sit in at school? I’d like to get him a seating evaluation so we can give you some concrete things to bring back to the school. A better seating system could help him in school. He could be on attention meds, but he’s on so many meds that I don’t want to put him on another one. So something like changing something in his environment like seating, let’s try that first.”

Dr. Ware and Dr. Rollins even recommended books that I could read and curriculums that I could buy to better learn how to help him at home. I’m super motivated to do those things, that’s right up my alley. As a parent, if you have resources or other families who have done something that might help, I’ll be the first to try it. So I found that helpful.

Adam: One other thing about the program is that not only has it really helped Zach, but during his operations, Dr. Ware actually saw his twin, Wes too. It really helped because of anxiety and everything, because Wes knows every single thing and he was there with us for the six months in the hospital. He didn’t come on one trip, and then actually after that trip he started to get anxiety. So Dr. Ware was able to talk with him as well.

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


I knew that Children’s had looked at her development when she was younger and she was right on track, so it never put any alerts up for me to do anything differently. The minute they told me she wasn’t where she should be, I had her evaluated and they were really great because they helped to institute the IEP for her this year. Last year she was getting pulled out just for reading, and throughout the summer her kindergarten teacher tutored her every week for two hours. I kept her tutoring over the summer so that she wouldn’t be behind in first grade, and now that the first grade started she has an IEP in school where she’s pulled out four times a week for 30 minutes for reading, 30 minutes for occupational therapy, and 30 minutes for math. So she has that in school, and then we work with her really hard at home too. I remember Dr. Ware saying, “You know if you work really hard with her for the next year, within a year she should be caught up where she’s supposed to be.”

I didn’t think she had deficits at all and I didn’t know about them. It didn’t really occur to me that with multiple surgeries using anesthesia and multiple times on the heart-lung bypass that they really can have issues with learning. It can just take her longer to learn things, and I’ve definitely noticed that with her sight words and her reading and how hard she has to work to try. She’s doing much better, but she still has to work so hard, and she still struggles. But she’s made tons of gains, so I know it’s going in the right direction.

I wish I knew that going into kindergarten, “Hey, you might not notice something, but it really could be there.” Maybe they did tell me, maybe I just didn’t hear it because she was so great, and there weren’t any issues. And I try really hard because I don’t want her to struggle and she has it hard enough any time she tries to go into the hospital and every time she has to have something done. I don’t want her to be the one in class that really struggles. So I try really hard to make learning fun for her at home. We play games with her and she doesn’t even realize we’re trying to build her hand strength playing Trouble when she has to push down on the button.

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


Chloe’s only had one appointment so far, but they said there’s still some residual issues going on. She’s got very good techniques for word retrieval, trying to find the right word for something she’ll hesitate, she’ll stop, she’ll think, she’ll run it through. Her perceptual is still not there either, which we actually were unaware of, we thought her perceptual was actually quite good now, but they ran some of those block tests or whatever they are, and they said that her perceptual is definitely still off.

The neuropsychologist gave me as an example where they show pictures and there’s a triangle and a square, and there’s a two-inch gap in between, and she asked Chloe to draw it on a piece of paper, and when Chloe draws it on a piece of paper, the triangle and the square are touching. So she said, “We need to know what is going on with Chloe, with her brain activity so we can address that.”

She’s on an IEP at school. Her school this year basically said she’s doing really well, she doesn’t really need her IEP, but I said I wanted to keep her on the IEP, because if she needs it later on, in high school or whenever, it’s easier just to revamp it than to try and get her back on a new one, and it looks like she probably will need her IEP as she gets further down the road.

 – Jim, father of Chloe, age 13, CPVT