Four things I learned at the Cardiac Neurodevelopmental Family Symposium

A crowd at the 2018 Cardiac Neurodevelopmental Family Symposium
The 2018 Cardiac Neurodevelopmental Family Symposium (Photo design: Sebastian Stankiewicz/Boston Children’s Hospital)

I’m sure most parents treat clinic visits as I do… an opportunity to get every last drop of information out of your child’s doctors while you have their undivided attention. So, when the opportunity presents, you take advantage of a full day of learning about your kiddo.

I had that chance recently — along with many other Heart Center parents — at the day-long Cardiac Neurodevelopmental Family Symposium. And while the learning was important, there was so much more that came out of the day.

Here are my top four takeaways:

1. Caring is key

Connecting with your child’s clinicians in a more social environment is so valuable. Chatting over lunch or giving or getting a hug from a doctor you haven’t seen in a while reminded me why I have always felt so good about the care my son has received at Boston Children’s. I had a chance to catch up with a doctor who saw my son as a toddler, and who has since passed him along to a colleague as he aged out of her care. This connection alone made the day priceless.

2. Community is important

Speaking of priceless, how about finally meeting the fellow heart moms I have known online since our kids were infants? We’ve watched each other’s kids grow up on Facebook, sent supportive prayers the night before cardio visits, and healing thoughts after surgeries. Now we get to meet in person to compare notes and share successes about this next phase of our children’s journey together.

So, what did I find most valuable? Understanding the common connection between my son Noah’s neurological and cardiac differences. 

3. Information is crucial

OK, so this is really what it’s all about. I took pages and pages (and pages) of notes from presenters who seemed to be speaking directly to me, as if they knew exactly what had been going on in my house and in my son’s school. I listened to doctors who KNEW their audience, and spoke to us like the advocates they know we are. All the heart parents I’ve ever met are informed, want straight information supported by research, and don’t ever want to be talked down to, and every presenter knew that.

So, what did I find most valuable? Understanding the common connection between my son Noah’s neurological and cardiac differences. We have a strong focus on social cognition in our house, and learning that it isn’t uncommon to see language, executive functioning and sustained attention issues with congenital heart kids was very helpful.

The week following the symposium, I had a meeting with my son’s education team and outside specialists and was able to share what I learned with them. This makes me a better advocate for my child, something I view as invaluable. We will have a renewed focus on gaining pragmatic language skills, along with executive functioning and classroom skills.

4. I am not alone

What was most stunning to me was looking around the room at all the parents. These parents have stood exactly where I have stood, cried where I cried, paced the same waiting room I paced, and are now on this next phase of their child’s journey. The resilience, strength, and pure love and concern for their kiddos was palpable.

What an extraordinary day. I left with a full head and a full heart. Thank you to the Cardiac Neurodevelopmental Program and those who fund this department for pioneering this research and for informing parents, therapists and educators. Your commitment to caring for our “whole” child has made me a better advocate for my child, and I am so grateful.

About our blogger: Lisa is mom to 8-year-old Noah and hopes that sharing her experiences will help inspire other Heart Center parents to learn more about their child’s neurodevelopmental journey.

Learn more about the Cardiac Neurodevelopmental Program.​

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