By Capri Rietel
I began writing this thinking that it would be easy to tell our story. Our little girl is at home with us, sitting on the couch with my husband and watching her favourite show. Things are normal. She is a typical three-year-old who plays with her brothers, rides her bike, and loves to see her friends. She is beautiful, funny, loving, and so kind.
We couldn’t imagine our lives without her.
I guess that’s why it’s hard to say what our story is. I feel like Ariel’s heart journey has just begun.
She was diagnosed, in utero, at 20 weeks, with an interrupted aortic arch and ventricular septal defect, which doctors believed was caused by a genetic disorder known as 22q deletion or DiGeorge syndrome.
We literally went from celebrating with our family and friends that we were having a girl to getting a life-changing phone call telling us something wasn’t right with our baby’s heart.
The weeks leading up to her delivery were filled with scans, appointments, and uncertainty.
But no amount of concern could overshadow the pure joy we had the day she was born.
The name Ariel means “Lion of God,” and she came into this world a fighter.
At five days old, Ariel underwent an extensive heart surgery performed by Dr. Sanjiv Gandhi, who is, by far, one of the most amazing human beings. He is someone for whom we are forever grateful.
As they rolled our baby away into the operating room, my husband and I walked out into the hallway, holding on to a pager and our faith.
After the surgery, she started the long road to recovery.
Ariel spent the next weeks recovering in the hospital. We watched her grow stronger and begin getting closer and closer to coming home. We were so blessed to have the support of family and friends who helped us. We had two boys at home, and my husband would make daily trips into Vancouver to be with Ariel and me.
She came home on a feeding tube and still has a gastrostomy tube to this day. While she struggled to gain weight in the beginning, she is doing well and at a healthy weight now.
The first year was by far the busiest. Ten different specialists, our pediatrician, and other support therapists all followed her progress. We are always beyond grateful for the amazing team at BC Children’s Hospital and the level of care they provide to children and their families.
The phenomenal Children’s Heart Network has reached out in so many ways to make us feel like part of a bigger family and to let us know that we are not alone.
Ariel is now three years old, is starting preschool, and, for the most part, leads a normal life.
I find it hard to tell our story, because I don’t know how far to go into the events and the experiences. As with many things, only people who have been in similar situations will ever truly come close to understanding what we have gone through and what lies ahead.
The truth is that what our family has gone through in the last three years will forever change our lives.
Our perspective on life has changed. We are able to appreciate small things that may have seemed insignificant not too long ago, because we have now experienced much bigger things.
Every heart family has a story of a diagnosis, treatment, and recovery. I think what really changes us is the journey along the way. Ariel was diagnosed before she was born, but our family began to change that day.
We found friends who would be there with us through the hardest times, and we lost friends along the way. Our children had to learn patience as they sat through countless appointments and scans.
We went from living in a place of total fear and worry to a place of complete peace after an experience at the hospital gave us the revelation that she is here to fight and win.
The nature of Ariel’s heart condition is that she will need more surgeries throughout her life. We don’t know what the future holds. What we do know is that one phone call can change your life. One moment or experience can bring new understanding and change. We know that other families who have gone through this with their children have tremendous strength and courage. We know that Ariel is a lion who, through it all, has conquered any limitations put on her.
So this is not Ariel’s story. It’s the beginning of her journey and of our journey as a heart family.
Bert, Capri, Coen, Evan, Ariel, and Reiner Rietel ♥
“Ariel’s Heart Story” is from our fall 2020 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.