Cameron H.'s Story: Parent's Letter Project Transposition of the great arteries- Cameron's parents

Dear parent of a child born with transposition of the great arteries,

Let me begin by saying if you and your child have found your way to Children's National, you are already in the best possible hands. Our son Cameron was born July 2, 2012, after a normal pregnancy, which included two perfect ultrasounds. Within the first hour of Cameron's life, we noticed a blue/grey tint to his skin and fingernails. Cameron's pulse oximetry (pulse ox) was determined to be in the 30s and he was placed on a ventilator. When the ventilator did not improve his oxygen saturation, an echocardiogram was performed. Cameron was diagnosed with transposition of the great arteries, a condition in which the aorta and pulmonary artery were attached in the wrong places. As a result of this heart defect, Cameron's body was not receiving oxygenated blood, and he needed to be airlifted to Children's National for corrective surgery.

After arriving in the Cardiac Intensive Care Unit (Cardiac ICU) at Children's, a balloon septostomy procedure was performed to enlarge a hole between the left and right atria, through which blood could mix and provide Cameron's body with oxygen-rich blood.

The next morning I arrived at Children's National. At the Welcome Desk, I was asked if I was mom and I burst into tears. The woman behind the desk got up, hugged me, and told me everything would be okay. Upon arriving in the Cardiac ICU, I was greeted by a team of compassionate nurses and physicians, who explained every monitor, every medication, and even drew diagrams to answer my questions. My husband and I were allowed to sleep in Cameron's room. We were encouraged to be present for rounds, which occurred twice per day, where the doctors caring for our son would discuss his case, and answer any questions we had. Once Cameron was stable enough for open-heart surgery, Pranava Sinha, MD, the surgeon who performed the arterial switch operation, spent an hour explaining to us the procedure, potential complications, and expectations for the future. He stayed with us until all our questions were answered and we felt comfortable with the procedure.

Cameron had his arterial switch operation when he was three days old. This was an open-heart procedure, which placed his arteries in the proper location. The compassion shown by the staff at Children's National helped us get through the worst day of our lives. We received hourly updates on the surgery through a pager, and the anesthesiologists even had us laughing prior to taking our son back for surgery. I felt entirely comfortable placing my baby in their care. After surgery, Dr. Sinha explained what we could expect over the days to come.

In the first few days after the open-heart surgery, Cameron was brought out of anesthesia, tubes and medications were removed, and he was weaned off of oxygen. Three days post-op we were moved to a step-down unit, where Cameron was treated by physical and respiratory therapists, and was evaluated by the cardiologist he would see on an outpatient basis. Our social worker worked with our insurance company to provide us a home healthcare nurse and physical therapist, and we were assured that Cameron would not be discharged from the hospital until we felt comfortable caring for him at home.

Our baby is now a healthy one year old. We regularly visit a Children's National outpatient center for Cameron's outpatient care, which has been exceptional. I cannot say enough wonderful things about this fine hospital, and the physical and emotional care provided for my son and our family during the most difficult time of our life.

If your child has been diagnosed with a heart defect, please know that Children's National will provide your child with the best care possible. Know that you are not alone, be positive, and understand that there is light at the end of the tunnel.

Sincerely,

Cameron's parents, Brittney and Matthew

Treatment Team

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