My Baby Girl, My Hero
How Scarlett’s battle for life gave me hope.
The best heroes are the ones who don’t even know that’s what they are. They live the life God gave them and amazing things just happen. No, I’m not referring to Forrest Gump — I’m talking about my little girl.
She was dealt a very difficult hand from conception. A fetal cardiologist diagnosed her during a routine, early-pregnancy ultrasound with Endocardial Cushion Defect. Basically, her heart was seriously malformed. This was bad enough news, but it turned out the doctor wasn’t finished.
“This condition is usually indicative of certain chromosomal anomalies,” he said without making eye contact with me. “So anyway…”
“Wait a second,” I interrupted. “Chromosomal anomalies? Like what, for instance?”
“Oh, you know…there’s an 80 or 90 percent chance your child has Down Syndrome,” he said, still without eye contact. “You can terminate the pregnancy now and save yourself a lot of trouble later, or we can operate when she’s born.”
The color drained out of the earth as I tried to process, all at once, that my daughter had a life-threatening heart condition, probably had Down Syndrome, and this doctor had the compassion and bedside manner of a wet, moldy mop.
We didn’t know anything about Down Syndrome or how to take care of a child with that condition, so the fear set in immediately that this would be a challenge too great to overcome. The only thing we knew in that moment was that termination was not an option.
Scarlett was born May 9th, 2011 at 10:12 a.m. She weighed 6 lbs. 12 oz., measured at 19.25 inches long and…it was apparent right away that she indeed had Down Syndrome. She was immediately strapped to monitors to gauge her heart condition and an oxygen tank to help her breathe.
She received two blood transfusions the day after she was born, and the doctors took her off of the oxygen machine and removed the central line from her umbilical cord on the fourth day. He advised me to prepare to take her home, which made me very happy. Briefly.
Several hours later, the medical staff summoned me back to her bedside and informed me that she had developed a condition called Necrotizing Enterocolitis. Basically, she had air in the lining of her bowels and this was somehow causing the lining of her bowels and colon to die.
She went back on oxygen and the monitors and started an aggressive round of antibiotics. She remained in the hospital for five more weeks, fighting for her life. It would not be the last time.
One fall day in late 2011, family and friends huddled in a tiny waiting room at Arkansas Children’s Hospital as Scarlett went through the most brutal thing a child can endure. The doctor stated that the procedure would take from five to six hours to complete, so we settled in for the long haul.
The doctor came out three hours later (didn’t he say it would take five or six?) and announced the surgery was complete and everything was perfect with my little girl. He wanted to keep her for about a week just to make sure she recovered okay and gained the strength necessary to go home.
Assured that everything was in order, I got on a plane back to my duty station in New Jersey. I would be back in that same cardiac intensive care unit less than a week later.
They removed Scarlett’s breathing tube five days after her surgery and seemed satisfied that she was making progress toward being released. Just a few hours later, I got a phone call that I needed to get back to Arkansas immediately. There was a complication.
I rushed to the hospital as soon as my feet hit Arkansas soil. Scarlett’s heart surgeon met me at her bedside and assured me that she was stable, but there was an issue that would require a second surgery in a few days. I was so upset that I couldn’t hold my tongue.
“Is the issue that you rushed through that procedure and it didn’t take?” I asked angrily.
He looked confused and asked me to explain what I meant.
“You told us that procedure would take between five and six hours, but you were out in barely three,” I said. “And now her heart is leaking to the point that you have to do this all over again.”
I peeled myself away from him and went downstairs to the hospital cafeteria to calm down and try to eat something. I was down there maybe 10 minutes when my cell phone started blowing up. It was the hospital calling.
I rushed back up to Scarlett’s bed to see what was going on, and the situation had changed drastically. As I stood there looking at my little girl, her monitors exploded into a shrill sound that could only mean one thing.
Her heart was no longer beating.
The surgeon barked out orders as nurses and orderlies raced around the room, preparing Scarlett for immediate surgery. We called family and friends, who all rushed to the hospital to take up vigil with us again. This surgery lasted more than six hours.
The doctor‘s demeanor this time was quite different from the aftermath of her first surgery. When I saw his face and how his shoulders were slumped in a position of defeat, my stomach rolled and then dropped through the floor. I just knew that we had lost our little girl.
“She’s fine,” he said wearily. “I found the problem and took great care to fix it. We will keep her for a while to make sure…”
“Wait,” I said. “You said all of this last week and yet here we are. That is a fragile child and she has had to do this AGAIN. How do we know this is really it?”
Several people around the room tried to calm me down, but I was scared.
“Sir, I apologize for all of this,” he said. “Sometimes these things just happen, but I stayed in there as long as I did today to make sure there will not be any further complications.”
Scarlett stayed in the hospital for several more weeks. The medical staff there observed her every move, sound and tic around the clock to make sure she was recovering properly this time. I slept on the floor or upright in uncomfortable chairs through every day of this recovery period; I was not going to leave my little girl there again.
Scarlett spent the holidays in her own clothes, at her own house, with all of her family. She continued to grow and recover from the trauma of spending most of the first six months of her life in various intensive care units, having two open-heart surgeries, and having wires and tubes snaking out of her like spaghetti strands.
She has aggressively attacked intervention therapies since just shortly after her second heart surgery. She learned how to walk, talk, play, and interact with others thanks to a regular regimen of speech therapy, physical therapy, occupational therapy, and an education plan for children with special needs.
Scarlett entered preschool at age two, which prepared her for mainstream education. She turned eight this year and is crushing first grade.
Why is Scarlett Hope my hero? Because she is a fighter. Children should not have to fight for their lives, but when they do, they rise up and give it everything they have. This little girl never accepted defeat through all of the things she had to endure. She fought and she won.
She has taught me everything I need to know about not giving up when the odds are stacked against me. She has taught me to push through when my heart is broken. She has taught me that love and faith can heal all things.
God gave me Scarlett; Scarlett gave me HOPE.
Frank Vaughn is an award-winning writer and photographer (don’t ask me how), husband, father, and military veteran from Little Rock, Ark. He likes sports, puppies, Netflix, and Rocky Road ice cream.
