Six years ago I was sitting in a patient room waiting for the doctor and her team to bring my daughter back from a few tests. I was told it was a routine appointment. As I watched the clock tick by – 20, 30, then 45 minutes of waiting – I grew frustrated knowing I would have to leave soon to pick up my son from school.
Just as I was about to go out and track down some answers with the jaw-clenched resolve of an agitated mama bear, the doctor entered the room.
The words I heard next turned my family’s world upside-down with a jarring blow.
Taylor had a hole in her heart called an atrial septal defect, the doctor said. It was the size of a silver dollar and was causing a heart murmur. Worse yet, they also discovered a severely damaged, leaking valve. As a result, her heart had grown to three times the size a 5-year-old’s heart should be due to being overworked to overcompensate for the defect and damage.
Taylor needed open heart surgery immediately.
I couldn’t even process what the doctor had told me. Immediate devastation flooded my body.
While the doctor phoned my husband, Kirk, for me, I tried to comprehend the gravity of Taylor’s diagnosis. The next several months were a series of traumas that culminated in one of the most profound, humanizing experiences of our lives as a family.
While my husband and I were still reeling from the news that our little girl’s heart was working three times harder than it should to keep her little body alive, the physicians and support staff quickly got to work planning her treatment.
Thankfully, we were blessed to work with some of the top doctors and medical facilities in Dallas. Taylor’s physician, an expert in pediatric cardiology, gave us several options for cardiothoracic surgeons.
Everything seemed to be moving too quickly for us to process. But we had to move fast, the doctors said. Taylor’s heart was damaged by a birth defect that’s typically found in infancy. Hers had gone unnoticed and the damage needed to be fixed through open heart surgery before it became irreversible.
Suddenly, all the little quirks about our precious daughter had a cause. Taylor wasn’t just small for her age. She wasn’t just a calm baby who could sleep anywhere. The wisps of hair on her head weren’t just dainty and delicate.
Rather, her body was expending so much energy just to keep her damaged heart pumping that she hadn’t been able to develop properly.
Her surgery was scheduled for three weeks after her diagnosis and we held our breath anxiously – both looking forward to the surgery that would save our little girl and fearing the process at the same time.
On a Wednesday morning in February, Taylor was put on bypass for surgery. Her chest cavity was cracked open, her heart was removed, and three pints of blood were transfused into her body.
We waited an eternity for the doctor to emerge from the surgery room and tell us she would be OK. Friends and family visited us, prayed with us, and helped us keep our minds busy. We were endlessly grateful for the support we received, but nothing could prepare us for the shock of seeing our daughter post-surgery.
Taylor was wheeled out on a gurney. Wires attached to a temporary pacemaker protruded from her chest along with a drainage tube from her heart. Her tiny arm was stuck with an IV line that administered meds and fluids. Her sweet face was obscured by a breathing tube and brain monitoring equipment. It crushed my heart to see her that way, yet the doctor said she did well through the surgery and her prognosis was encouraging.
As we waited for the hospital staff to get Taylor situated in her ICU recovery room, Kirk and I looked at each other with relief. We had made it to the other side of the tunnel.
Suddenly, as if we finally were able to see beyond the film of our own grief, we realized how blessed we were to know we would be able to walk out of the hospital in a week’s time and take our baby home. After settling into the ICU for pediatric heart patients, we asked a nurse about the other patients on the floor. She explained that many were newborn infants, some of whom were born with heart defects that could not be repaired.
As we looked around, we saw couples and families gray with grief over the knowledge that their children would never leave the hospital.
A few hours prior, we felt as though our world was crashing around us as our daughter faced the uncertainty of a massive heart defect. But our prayers were answered. In the hospital, we encountered parents whose children had heart defects that couldn’t be healed and they were just hoping for more time with their child.
While in the pediatric ICU before surgery, Taylor’s bed was the biggest. All the other patients in the ICU with Taylor were newborn babies or children under a year of age. Many were there to be as comfortable as possible while their parents spent as much time with their babies as they could.
After surgery, Taylor was moved from the ICU to recover in the sterile pediatric oncology wing. We were hit with the harsh reminder of how fortunate we were to be watching our daughter get stronger while so many children around her struggled through cancer treatment and were fighting for their lives.
I went from being overwhelmed by anxiety over the circumstances of Taylor’s diagnosis to being overwhelmed by gratitude that we were not faced with a worse fate.
Taylor just turned 11 on December 19th. After her surgery, Taylor grew strong, she was full of energy, and she even developed an adorably spicy personality that hadn’t been present before her ordeal.
She joined a gymnastics team, took up dance, and played flag football on the boys’ team. Today, she’s in love with volleyball and band, and she gets straight As in school.
A few years ago, Taylor made a scrapbook. In it, she put pictures of her from after the surgery. Though she doesn’t remember much of the process itself, she knows that this is her story and she can share her experience to help others.
Now, anytime she’s fearful of something like trying out for a new sport or doing a presentation in class, I tell her, “You had open heart surgery. Everything else is a walk in the park.”
In the summer, Taylor attends a camp for kids who were born with congenital heart defects. It’s a week-long experience where the children get to bond and share incredible experiences thanks to the Nick & Kelly Children’s Heart Fund.
Thanks to our first-hand experience, we have a whole new perspective on childhood illness and the tragedies many parents face every day. We were fortunate enough to get to take our little girl home and now we want to help the organizations that supported us through a very difficult time.
As the six year anniversary of my daughter’s diagnosis draws near, I realize how blessed I am to be a part of a company that shares my family’s values of gratitude and giving.
My family has been donating to the Nick & Kelly Children’s Heart Fund since Taylor’s surgery, volunteering in our community and church, and encouraging Taylor to consider being a leader at her camp as she gets older.
Similarly, John Lynch & Associates has pledged to make community giving an even more prominent pillar of our work every year. In addition to supporting Ryan House, John Lynch & Associates is also pursuing volunteer opportunities with the Nick & Kelly Children’s Heart Fund.
I believe firmly in giving back to the people who helped you reach today. In this season of love and service, I encourage you to think about the people and organizations you can support.
Do you have an incredible experience to share? Tell us about it in the comments below. You never know how much your story can help someone else who’s struggling now.
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