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A heart for Sophia

October 06, 2011

For Sophia’s mom, it’s the little things in life that matter. Taking Sophia to the grocery store and letting her pick out a free cookie, watching her jump into the swimming pool or reading her favorite books to her may seem like small things. But, they are actually miracles.

When she was five months pregnant, Sophia’s mother Benita went for a routine ultrasound. Like most first-time mothers, she was excited to have the opportunity to see a picture of her growing baby and to find out whether she would be having a boy or a girl. However, she also received some unexpected news that day. Something wasn’t quite right with the baby, and the doctors weren’t sure yet exactly what was wrong.

Benita then met with a specialist each week who carefully monitored Sophia’s  progress. The doctors determined that Sophia’s heart had not formed properly, and she was diagnosed with an atrioventricular (AV) canal defect. This meant that instead of a normal heart with four distinct chambers that worked together to pump blood effectively, Sophia had holes in the walls of her heart that gave her only one large chamber. Sophia’s heart wouldn’t be able to pump the blood her body would need. Benita and her husband received some of the worst news they could imagine: their baby might not survive being born.

When Benita was 36 weeks along, she delivered Sophia by Cesarean section at Winnie Palmer Hospital. She remembers:

“Going into the C-section was the hardest part. Inside , my heart was beating for her. If she’s inside, she’s safe, but outside there is nothing I can do for her.”

Immediately after birth, Sophia was taken to the neonatal intensive care unit (NICU) and subsequently transferred to the cardiac intensive care unit (CICU) at Arnold Palmer Hospital. Benita remembers the empty feeling as she was discharged from the hospital:

“I had balloons and flowers, but I didn’t have my baby.”

When she was only 6 days old, Sophia underwent her first heart surgery, performed by William DeCampli, MD, PhD, medical director and pediatric cardiothoracic surgeon at The Heart Center at Arnold Palmer Hospital. This was the first of a series of four surgeries planned to correct the defects in her heart. After a successful surgery, Sophia recovered in the cardiac ICU.

Benita remembers this time as a very difficult period. Sophia had severe reflux and was vomiting on average 18 times a day; she had a tube placed in her stomach to provide nutrients to her since she was unable to eat. Recovery was not only physically difficult for Sophia, but emotionally wrenching for her family. But, Benita says, she felt comforted by the medical staff who were there to help her:

“All of the medical help in the NICU and CICU, it was so sincere. They understood how to be sensitive to me. They’re the only other people who understand. They truly have your child’s life in their hands. You need to know that they care, and they did.”

At 2 1/2 months of age, Sophia was finally able to go home for the first time. When Sophia returned to the hospital to begin preparations for her second surgery, her doctors became concerned. Sophia’s body hadn’t recovered as well as expected from her pre-surgery testing, and they were concerned her heart might not be strong enough for a second surgery.

Sophia’s doctors discussed at length whether it would be best for Sophia to go ahead with the second planned surgery or whether she should receive a heart transplant. Benita says that what truly impacted her is that each of these doctors were fighting not only for Sophia’s survival, but to give her the best quality of life.

Her doctors eventually recommended that Sophia be transferred to Shands Hospital for Children at the University of Florida where she was placed on the waiting list to receive a heart transplant.

Sophia and her family then waited in the hospital for five and a half months, until one day they received a call that there was a heart for Sophia. At 8 months of age, Sophia underwent a successful heart transplant. Three weeks later, she was sent home from the hospital with a new lease on life.

Benita says she never fully realized how sick Sophia was until after her transplant. Her pale, bluish complexion has been replaced by bright pink lips and rosy cheeks. At two years old, Sophia now runs and plays like any other little girl her age. Benita reflects on their journey:

“She is truly a miracle baby. Every step of the way she wasn’t supposed to survive, but she did. When I look at her scars , I see them as a badge of honor. They remind me that every time she wakes up in the morning and every breath that she takes is a miracle.”

Sophia has overcome seemingly insurmountable obstacles, but for her the story is just beginning. Her family is looking forward to a long, happy and healthy life for their little girl. Miracles and all.