Every year, 100,000 babies don't make it to their first birthday because of CHD.
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.

Conley's Heart

TOF is actually four heart defects in one, they include – ventricular septal defect (VSD), pulmonary stenosis, right ventricular hypertrophy, and an overriding aorta.

Ventricular Septal Defect (VSD)

The heart has an inner wall that separates the two chambers on its left side (left atrium & left ventricle) from the two chambers on its right side (right atrium and right ventricle). A VSD is a hole in the septum between the heart’s ventricles that allows oxygen-rich blood from the left ventricle to mix with oxygen-depleted blood from the right ventricle.

Pulmonary Stenosis

This defect involves the narrowing of the pulmonary valve, creating an obstruction when blood tries to flow from the right ventricle to the pulmonary artery to receive oxygen from the lungs. With pulmonary stenosis, the pulmonary valve cannot fully open.  Thus, the heart must work harder to pump blood through the valve.  As a result, not enough blood reaches the lungs.

Right Ventricular Hypertrophy

With this defect, the muscle wall of the right ventricle becomes enlarged due to underlying causes that put added stress on this part of the heart. 

Overriding Aorta

This defect occurs when the aorta, the main artery that carries oxygen-rich blood from the heart to the body, is displaced between the ventricles and directly over the VSD. 
Complications: With Tetralogy of Fallot, not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows to the body, resulting in dangerously low oxygen saturations. Pulmonary stenosis puts additional strain on the heart, resulting in it overworking itself which leads to an oversized right ventricle.
Symptoms: A bluish coloration of the skin (cyanosis), shortness of breath, rapid breathing, especially during feeding or exercise, fainting, poor weight gain, tiring easily during play or exercise, heart murmurs and tet spells (sudden development of deep blue skin, nails and lips after crying, feeding, or when agitated).
Treatment: Tetralogy of Fallot is repaired with open-heart surgery to repair all four defects. Additional surgeries throughout adolescence and adulthood are common to repair or replace the pulmonary valve.
Prevalence: This is one of the more common CHD’s occurring in 5 out of 10,000 live births.

Photos provided by: Love Gray Photography

Comments

Marti Garlett

Marti Garlett said:

My dear friend is the twins’ maternal grandma. This whole family is beyond awesome. Prayers, prayers. And ever more prayers.

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