AGE : 3 years old
DIAGNOSIS – Tetralogy of Fallot with Pulmonary Atresia and MAPCA’s. She also has dextrocardia (heart points to right side of heart not left)
WHEN DIAGNOSED – 6 weeks old
Penny’s mom Amanda writes:
“I always had this feeling (even while I was pregnant) that something just wasn’t quite right with Penny. Penny became more and more sleepy. She would wake for a feed but would nurse for a few minutes before she would fall back asleep. She would become so sweaty behind her head and the back of her neck that my arm would be soaked a few minutes into nursing.
We took her into emerg one night, because I could not shake the feeling that something was wrong. It was 5 days later that we had her full diagnosis….From diagnosis to her first surgery (July 2014) was about 2 months. She needed to gain more weight because the surgery would be so long, they wanted her to have some reserve to help her fight through recovery. Those 2 months were agony. She felt like a ticking time bomb, I was terrified all the time.
Nothing prepares you for the day you hand your baby over to the nurse, knowing all the risks and that her perfect little body will nevery be the same. After the first surgery (12 hours) she came out to CCCU fighting. Her chest was open from all the swelling in her heart, and we could literally see it beating for nearly 8 days. She started having complications after the first surgery, and as a result was not able to come off the ventilator. After a few weeks and a couple attempts at failed extubations, our CCCU team did some investigations that ended with results indicating she needed another open heart. I was devastated.
This second surgery was easier to wrap my head around.But this time what a difference after surgery! She was off the ventilator within 48 hours and never went back on. She came back with chest closed. It was amazing! A few more weeks and we were finally all home together.
The next 2 years were really rough, Penny got sick A LOT. We were in and out of SickKids with respiratory infections, pneumonia, etc. She spent her first birthday at SickKids having a party with her nurses who spoiled her rotten.
We know that as Penny gets older, she will require more surgery. This is a life long condition. Each year gets easier as we prepare for that.
Penny is 4 years old. She is an active, fun and happy little lady. She loves school and makes friends so easily. She has an incredible sense of humour with amazing comedic timing. She loves to dress up, sing and dance. She loves to build blocks and get messy. Her favourite food is lasagne and all things peanut butter. Her favourite colour is “rainbow” these days. She is so strong and resilient. Truthfully, you would never know she was any different.
TOMORROW: Meet Braden.
If you would like to be part of the Heart Warrior Project please send Lisa an email at firstname.lastname@example.org