By Carly Crocker

No parent is ever prepared to hear the words, “Your baby is on a tremendous amount of support and may not make it.” During that time of uncertainty, unable to hold our baby, all we could do was wait minute by minute, hour by hour at his side and love him. We prayed continuously that our son would never give up the fight. Now, nearly six years later, I can share the story of our courageous son, Houston, and how the Children’s Heart Network has impacted our family.

Our life-altering journey began during a routine ultrasound at five months of pregnancy. Doctors discovered that our unborn baby had a congenital heart defect and several other significant health issues. After weeks of close monitoring and several surgical procedures to remove the fast-pooling fluid surrounding our baby’s heart and lungs, it was decided that the best chance of survival was treatment outside the womb. With a team of nearly two dozen medical staff on hand, Houston was delivered by emergency caesarean section two-and-a-half months premature. My husband Mark and I had one quick look at our son before he was rushed off by BC Children’s Hospital specialists for life-saving treatment.

In the days and weeks that followed, Houston underwent major surgery and fought infections that many times nearly took his life. Our little warrior was fighting battles of great magnitude. After an excruciating 30 days in the Neonatal Intensive Care Unit, we were finally able to hold our baby in our arms for the first time—a moment that will forever be imprinted in our hearts. Where there is love there are miracles, and on day 97, thanks to mega-love and care, Mark and I were given the words that every NICU parent longs to hear: “You can take your baby home.” Finally, our family of four—at that time—would be together under one roof.

Houston’s congenital heart defect (tetralogy of Fallot) and intricate little system was caused by a complex genetic disorder called Noonan syndrome. This created a very weak and fragile immune system. While preparing for his upcoming heart and bowel surgeries, our home transformed into an instant bubble, which was necessary for Houston’s survival. We were isolated from most of our family and friends and before we knew it our home shifted into a mini medical centre. Mark and I became the experts, working around the clock managing our son’s care while balancing the needs of a healthy and vibrant three-year-old-daughter. Threading feeding tubes down his nose, priming and connecting the feeding machines, changing ostomy bags, and drawing up medications were just a few of the many things we were willing to do have our son home. He was three months old, and there was very little information to help and guide us with Houston’s needs—he was by no means your typical baby. As we nurtured and protected our family, we slowly came to realize how overwhelming and financially draining this new normal had become.

It was during this vulnerable period in our family’s life where the support of the Children’s Heart Network came to the rescue. During one of Houston’s routine cardiac appointments I came across a CHN newsletter inviting families to join a local parent support group. This coffee group provided me with the much-needed opportunity to socialize with other moms in a casual environment where I could talk about my son and listen to other success stories. Even though most of our medical journeys with our heart children were different, empathy and understanding linked us all.

At 18 months of age Houston underwent a successful open-heart surgery, which was the turning point in his health. For the first time in nearly two years, he was able to live outside of the bubble, which meant our family was finally able to start enjoying outings altogether. The CHN welcomed us with many opportunities. The Christmas party, Easter Egg Hunt, pumpkin patch, and the Cultus Lake Waterslides are all events our family looks forward to attending annually. What has always stood out to Mark and I is the CHN’s focus on family, not just the heart kids. The importance of these organized events is that it encourages the families to leave the safety of their home and join the fun with a supportive community. In addition, with the cost of these events being covered, it takes away any financial stress, allowing the families to simply enjoy their day. For our oldest daughter Olivia, the CHN community has given her the opportunity to meet other heart children and their siblings. This has certainly strengthened her empathy and compassion toward others.

Whether putting on a concert with his trombone, sporting his Michael Buble outfit, his spiked hair and microphone in hand, Houston’s gentle and loving spirit and infectious squeal, lights up any room! With a combination of 13 major surgeries and procedures under his belt, Houston has proved countless times that he is our hero. His ability to overcome daily obstacles from his vision and hearing impairments and speech delay amazes everyone he meets. He inspires many people with his unique gift to keep on smiling no matter the hardship he faces.

“Helping to bring hope to heart families” is the root of the Children’s Heart Network. Mark and I are honoured to share Houston’s story, as it is our wish to spread hope to all those families starting their journey. With a second open-heart surgery needed in his future, we are fortunate to have an amazing community within the CHN that we know will empower, support, and spread hope to Houston and our family alongside our journey!

I’d like to share a few lines from one of Houston’s favourite Buble songs—a song we sing together everyday. It’s called “Close your eyes.”

Close your eyes
Let me tell you all the reasons why
You’re never gonna have to cry.
Because you’re one of a kind.
Here’s to you
You’re the one that always pulls us through
You always do what you gotta do
Because you’re one of a kind

Thank god you’re mine.

—Carly Crocker