Meet Tad! This little guy just turned 3 on November 5th (happy late birthday!)! He loves getting in trouble and being mischievous! Tad's family and friends have given him so much support after he received his CHARGE syndrome diagnosis, and he is so determined to enjoy life to the fullest! Read the interview below with Tad's mother to learn all about Tad's journey and his superpower to spread joy wherever he goes :)
1. To start off, can you tell me a little bit about Tad?
Tad recently turned 3 on November 5th...I'm so excited and sad that my baby is growing up! Tad has a genetic defect called CHARGE syndrome, and each letter stands for a defect that is common to those effected by it. He also has a few heart defects, with his main defect being HLHS (hypoplastic left heart syndrome) where his heart never fully formed. He also uses a trach, a g-tube, and a pacemaker.
2. Can you tell me a little more about Charge Syndrome?
Tad’s main challenges, now that his cardiac status is more stable, is that his vestibular system (which provides a sense of balance) is very affected. He is missing many pieces in his ears which affects his balance and he is struggling to accomplish milestones for his age. However, he is amazing and is learning each day how to push past any obstacles that comes in his way!
3. What is Tad's day to day life like?
Even before the COVID-19 pandemic, Tad has always lived a very sheltered life. His immune system can not handle even the most simple interactions most babies can have. In order to keep him safe, we have limited all interactions with others outside our house. As Tad gets older, he gets stronger but we take many precautions to keep him safe as even a common cold can wipe him out. Tad has a very busy schedule with appointments and therapies, but he personally thinks all his therapists and doctors are his best friends and usually doesn’t mind his busy schedule.
4. What would surprise people the most about Tad?
I think the biggest surprise with Tad is reading his medical chart and then seeing him in person. He truly is incredible, and like lots of other children with complex medical history they defy the odds and have such a joy for life!
5. When someone meets Tad for the first time, what do you hope they think?
When someone meets Tad for the first time, especially if they are not in the medical community, seeing some of his differences like his trach and gtube can look different; however, I hope they can see past that and see him for the wonderful, happy little guy he is.
6. What does Tad like to do for fun?
Tad like most toddlers and boys loves making messes and getting into trouble. We have two little dogs and he thinks it’s hilarious to crawl and chase them around all day. And he loves to make mom and dad laugh!
7. What is the most important thing for someone to understand about Tad's condition?
Something I wish people knew more about is how common congenital heart diseases are. It's the most common birth defect and the highest cause of infant deaths, but it is not talked about enough in our community. And in regards to CHARGE syndrome, if you ever have the pleasure of meeting a charger, I hope you get to experience their drive and determination. We could all learn a few things from them!
8. Has Tad's diagnosis affected your job?
Thankfully I have an INCREDIBLE family, I mean incredible. I had just started college when I found out I was pregnant, and when we got Tad's CHD diagnosis in utero, my aunt allowed us to stay with her to be close to one of the best heart surgeons who gave Tad a chance at life. And I have been even more fortunate to be a stay at home mom for Tad to focus on him and everything he needs.
9. Are there any resources which you recommend if anyone wants to learn more about Tad's condition(s)?
Sisters by Heart is a wonderful organization bringing awareness to Hypoplastic Heart Syndrome (a heart defect) and the CHARGE Foundation provides resources for families effected by CHARGE.
10. Has the COVID-19 pandemic affected Tad's day to day life? If so, how?
We have lived in this lockdown type environment since Tad was born, so it hasn’t really affected much of Tad’s schedule besides some cancelled appointments and therapies. It has been weird to see everyone live the type of life we have simply just adapted to for Tad’s well-being, and I know so many medical parents who would agree.
11. If you or Tad could tell the world one thing, what would it be?
Don't judge a person by their abilities or disabilities. Honestly, I wish Tad could give a lesson on joy to everyone that comes his way because the amount of joy his little body contains is amazing and everyone could benefit from that!