When our daughter, Rachel, was born, it was the culmination of a dream -- and a lot of hard work. Not just the labor (which was hard enough!); my husband and I had also spent six long, frustrating and emotionally exhausting years waging war against infertility in order to start our family. That day, holding my new baby in my arms, I felt profoundly thankful that I was finally blessed with a perfect, beautiful and healthy little girl.
This illusion lasted less than a month. By her four-week check-up, Rachel had failed to thrive, despite incessant nursing. By the time she was six weeks old, she had developed a raging case of jaundice. By her eighth week, we were living in the hospital, and a battery of tests and exploratory surgeries had confirmed our fears: Rachel was born with a rare and fatal liver condition (called biliary atresia, or an absence of bile ducts); without a liver transplant, she wasn’t going to survive.
My husband and I had thought we’d won the race by being able to have a child. Little did we know that it was only the first lap of a very, very long race.
It was 1993. Pediatric transplantation was in its infancy; if you were lucky enough to receive a transplant (many didn’t), there were other hurdles to overcome: recovery from the surgery itself, followed by the fears of rejection, infections, and a life spent immune-suppressed. In short, the future was a big unknown.
We tackled it, one hurdle at a time, one day at a time. We got her listed at multiple transplant centers around the country; we read medical journals and research papers instead of sleeping; we waged war with our insurance company. It all paid off. We were fortunate to receive Rachel’s gift of life on February 22, 1994, when she was four months old.
And that’s when the real race began.
Rachel’s recovery was a rocky one, and we lived in and out of the hospital for the next two years. During the rare times we weren’t in the hospital, we developed a weird, new “normal” at our house: a blood pressure machine took up permanent residence on the kitchen counter; the crisper in our refrigerator was full of medications; an overnight bag was packed and in the car at all times (tip: bring your own pillow and a bath mat – those floors get slippery!); we learned how to draw blood for daily labs, and how to administer IV antibiotics at home so we could keep her out of the hospital as much as possible.
One day, while my mother was visiting from out of town, she watched me (slightly bug-eyed) as I tended to Rachel’s dressing changes, oral meds, IV meds and blood pressure monitoring (plus bathing, feeding and diapering, of course). “Erica”, she said. “Can I give you a little advice?”
I looked at her, surprised. My mother’s advice was never forced and always welcome. “Sure, Mom”, I said. “What’s up?”
“Honey, you’re doing a great job with this little one, and I know she’s going to be fine,” she replied. “As she grows, though, please be careful to not raise an invalid.”
The years have come and gone. This June, my lovely daughter will be graduating from high school. The girl whom the doctors said wouldn’t grow now towers above her peers. She has a beautiful smile and a laugh that makes others laugh with her. She’s outgrown a dozen food allergies, and overcome color blindness and a learning disability. Her path has not been the easiest one; but she’s always persevered, always fought back, always overcome the generous helping of adversity that’s been served to her with a smile and with grace. She’s prevailed, I think, because I listened to my mother. I didn’t raise an invalid. I raised a daughter.
April is “DONATE LIFE” month. Consider these facts:
• 113,771 people are currently waiting for an organ (1,801 are children)
• Every day, 18 people die while waiting for a transplant
• One donor can save up to eight peoples’ lives
To learn more about organ donation, please visit: www.organdonor.gov
Erica Butler is VP of Marketing for HALO Innovations. When she’s not working to spread the word on safe sleep, she’s at home with her husband, Tim, children Rachel and Jake, and golden retriever, Gunner.