Conley James Hickman | Heart Warrior of the Week
Our Heart Warrior of the Week is Conley James Hickman or “Conley the Brave,” who is living with Tetralogy of Fallot. He and his fraternal twin brother were born at 34 weeks gestation on February 26th, 2017. This is his story, as told by his Mom, Kate.
Conley was diagnosed in-utero around 28 weeks. When we found out, we were stationed in Virginia (Alan, Conley’s dad, is in the U.S. Navy), across the country from all of our family and support system. We also lived three hours away from the hospital that would have performed Conley’s surgery, which would likely be soon after birth. Because he was diagnosed in-utero, we had just enough time to request Humanitarian Reassignment orders. We were approved and reassigned back home to Los Angeles, near my family and Children’s Hospital Los Angles, ranked one of the top 10 pediatric cardiothoracic surgery hospitals.
Conley has undergone one open heart surgery (partial repair) when he was 5 days old, a g-tube surgery since eating orally is too dangerous with his VSD which causes him to have labored breathing, and an MRI with cardiac anesthesia to assess damage from the stroke he had which was caused by a blood clot from the PIC line he had at the hospital.
During all of this, Conley spent about five out of his seven months of life in the hospital. He is currently on thirteen medications that are taken multiple times per day. They should hopefully all be discontinued once he fully recovers from his upcoming heart surgery on September 25th with the wonderful Dr. Starnes at CHLA. He will need at least one more heart surgery after that when he is older.
We sometimes worry about Conley’s development, which is delayed due to how long he stayed at the hospital after he was born. We also struggle with helping him do normal baby things like tummy time because of bleeding at his feeding tube site caused by the anticoagulants he is on. But we also trust that with help, he will catch up on his own timing. Being a CHD family has been harder than we ever imagined it would be. One of our biggest struggles has been finding balance. Conley has a heart healthy twin brother, Paxton, and juggling the time and responsibilities that both babies require has been extremely difficult. It’s hard not to feel guilty when you wish you could give both babies all of your attention but simply can’t. When you add in the extensive care that is involved with Conley’s condition, it can be a lot to handle. We are grateful to have in-home nursing help, but at times it can contribute to the imbalance, since you have a designated professional there to help with one of your children, and the other is very needy. It’s tricky to find a balance, but we try to do our best and be fully present with both of them.
Conley’s strength and bravery through all he has been through inspires us so much. At six and a half months old, he has been through so much more than most people endure in a lifetime. Right when things look like they are about to get better for him, something new happens, whether it was his stroke, an infection, severe acid reflux, or trauma to his g-tube site. There is never a dull moment, and after having that type of experience time after time, it’s hard not to expect the worst and worry what will be next. Our hearts ache for him because he has never known anything else, he has never known what it’s like to breathe or eat normally. He doesn’t know what it’s like to not get constantly poked and prodded. And yet through it all, he is so brave and has the sweetest little spirit. It has been such a blessing to watch him blossom into the person he is becoming.
TOF is actually four heart defects in one, they include – ventricular septal defect (VSD), pulmonary stenosis, right ventricular hypertrophy, and an overriding aorta.