“Mama,” Colman said, “will you tell me my story?”
“What story?” I teased.
“You know, my story!”
Colman was about four years of age when this story time ritual started as I tucked him into bed at night. Sometimes he’d want to hear his story every night for a couple of weeks. Other times, a month or more might go by in between.
I have to admit it’s quite a story with Colman at the very center of all the drama. No wonder he likes for me to tell it. In words Colman could understand, I’d tell him the story about his special heart.
In honor of Congenital Heart Defects Awareness Week, I’d like to share Colman’s story with all of you.
When I was thirty-two weeks pregnant, we received the devastating news that our middle child, Colman, would be born with a complex congenital heart defect known as hypoplastic left heart syndrome. The left side of Colman’s heart had not developed properly which would result in him being born with a two-chambered heart. My husband and I were given three options to consider at that time:
- Heart transplant, but Colman would probably die waiting due to a shortage of neonate hearts;
- A palliated repair that involved three heart surgeries performed in the first three years of life with the first open-heart surgery within days of birth;
- Palliative care, which meant we would take him home and do nothing and he would die within a week or two.
My husband and I decided to move forward with finding a surgeon to perform the palliated repair. On April 2nd, 2004, when Colman was only three days old, Dr. John Calhoon performed the Norwood, the first of the three life-saving surgeries that Colman would need to survive. Colman came out of the operating room with his chest open—I could see my son’s heart beating any time I cared to look, which I must confess wasn’t often—until all of the swelling subsided and Dr. Calhoon felt his chest could be closed, which was almost a full week later. Colman flew through recovery and I was sent home with my little ticking time bomb when he was just twenty-one days old.
Colman went back into the hospital for a heart catheterization at three months of age because he wasn’t doing well. His oxygen saturation levels were dangerously low and it looked like he was going to need his second surgery sooner rather than later. The pediatric cardiologist and heart surgeon sent Colman home on what they described as a “whiff” of oxygen with the hope that he’d be able to make it to four months of age before needing the second staged surgery. The “whiff” of oxygen required delivery of an oxygen concentrator to our house by a home health agency along with several oxygen tanks for when we had to leave the house to take Colman to doctors’ appointments. We spent the next month with our baby hooked up to a twenty-foot tether or lugging around heavy oxygen tanks. A “whiff” of oxygen sounded like no big deal when it was proposed. In reality, it was anything but.
At four months of age, we had one emergency admission into the PICU for low oxygen saturations. Then Colman underwent his second heart surgery, the Glenn, on August 6, 2004, when he was barely four months old. He was released a short five days later.
The next two and a half years were thankfully uneventful health-wise as Colman grew and thrived. He was a tiny tyrant, whose terrible twos lasted from the time he was eighteen months until the age of four. Colman hated medicine, which he had to take on a daily basis. I always worried about how much medicine actually made it into his system because he was an expert at spitting it out and all over me. Colman was a one-man wrecking crew who could be found painting the walls with yogurt or peeing in the dog’s bowl the second your back was turned. He definitely kept us on our toes.
Colman’s third and final open-heart surgery of the staged palliation took place on May 16, 2007, when he was three years old. During that surgery, the Fontan, Dr. Calhoon noticed that Colman’s tricuspid valve, the only valve between the chambers of his two-chambered heart, was leaking significantly. And that was a problem. It was decided that Dr. Calhoon would go ahead and try to fix the valve and the repair was a success.
Colman’s recovery from the Fontan was difficult. He was in the PICU for several weeks because of pleural effusions and required several small surgeries over the course of a six-week period in order to place chest drains. He was miserable. The chest drains were painful and his refusal to take Motrin for pain management only managed to make his recovery long and hard. We were well into July before he finally started acting more like himself.
Even though I knew in the back of my mind that Colman’s surgeries were not meant to last a lifetime—that all Fontans fail eventually—it was a relief to have the third and final surgery behind us. We looked forward to having a bit of normal after such a long, hard road. Colman started kindergarten on time and played tennis and baseball.
Friends would ask, “Well, that’s it, right? Colman’s all good now?”
I was never sure how to respond to that question without seeming like a Debbie Downer. The real answer was, “No. Although he’s had the three surgeries, his condition will require life-long management. Eventually, he’ll need a heart transplant.” Instead, I fed the misconception that congenital heart defects can be fixed. I’d respond with what I felt was truthful, “He’s doing great right now.” Very few people would catch the “right now” and ask what I meant. Most would not.
After being in and out of the hospital for the first three years of Colman’s life, we had five years where he was free of hospitals. Colman unexpectedly went into heart failure in July of 2012 when he was eight years old. At that point, his team of doctors felt because of the deterioration of his heart, there was nothing more that could be done here at Santa Rosa Children’s Hospital and Colman was taken by air ambulance to Texas Children’s Hospital in Houston. We stayed there for almost three weeks and they managed to stabilize him with medication.
Colman came home in August of 2012 on eleven medications and chest percussion therapies. Although I’d been accustomed to giving him a couple of medications once a day, eleven medications was completely overwhelming for a mama who can’t remember to finish taking her own antibiotics for strep throat.
After being followed closely by the cardiomyopathy clinic at Texas Children’s Hospital for the last twenty months, Colman is now in the midst of undergoing an evaluation for a heart transplant. We’ve already been made aware that we’ll face some pretty big challenges in finding a heart for Colman, but when they finally get ready to list him for transplant, we’ll be ready.
Colman’s story is not unique. Each year, 40,000 babies are born in the United States with congenital heart defects. And each year over 4,000 of those babies will not live to see their first birthdays.
Colman’s my heart warrior. [hr]
Heather lives in San Antonio with her three boys, Liam, Colman and Rowan. It’s actually four boys if you count Kevin, her husband. It’s pure chaos. She started a private blog in 2006 in order to keep family and friends updated on Colman’s health. Colman is the reason she’s a crazy heart mama. Otherwise, she’d just be a crazy mama. You can follow along Colman’s journey here. Please feel free to contact Heather if you have any questions at [email protected]. You can also find her on Twitter @crazyheartmama and on Facebook at Heather Maloy – Crazy Heart Mama.
Courageous boy and tenacious, loving parents. I hope your stories end well. Best wishes.
Thank you for sharing sweet Colman’s story. He is a heart warrior that is blessed to have such a wonderful and strong mother. You are amazing, Heather!