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Heather Harpham's memoir "Happiness" tells the story of her daughter Gracie, who was born with a blood disease that required regular blood transfusions. The only possible cure was a risky bone marrow transplant.
Harpham (@HeatherHarpham) joins Here & Now's Robin Young to talk about the book.
Book Excerpt: 'Happiness'
By Heather Harpham
“Have you considered having another child?” Dr. Koerper shifted in her seat.
Brian and I stared at her. When you have one sick baby, the absolute last thing in the world you want is two sick babies.
“Listen,” Dr. Koerper continued, undaunted, “Amelia-Grace could be cured.” Full stop. “With a bone marrow transplant. The first step is to find a donor. The better the match, the higher the success rate. A sibling match is best. Kids with a sibling match have the highest rates of survival.”
A sibling match? Survival rates? She seemed to be speaking in tongues.
“We don’t know what is broken, but if we take out the old engine and replace it with a new engine, the car will run.”
“The car will run?” Brian said, making her analogy sound as banal and useless as it was inscrutable. I gave him a murderous look.
“The transplant gives her a new engine, new bone marrow. Gracie is the car,” Dr. Koerper said.
After a year and a half of constant blood transfusions, after a year and a half of false hope and wrong turns, Dr. Koerper had finally stopped promising that this undiagnosable disease would spontaneously resolve. That Gracie would wake up OK one day. She was admitting defeat: the disease was not going to get any better. Gracie would continue to require blood transfusions for the rest of her life. Unless . . . we could eradicate the disease. Cure her. We could make her better.
Brian looked stricken. “A bone marrow transplant sounds like an extreme solution to a problem we haven’t even defined yet.” His tone, as he said the words bone marrow transplant, made it sound like a terrible thing to do to a child, like leaving Gracie by the side of the road with nothing but a cardboard sign that read “Toledo” and a warm can of Dr. Pepper. I, on the other hand, only heard cured.
I squeezed Brian’s knee, momentarily euphoric, until I remembered that this undertaking, outlined by Dr. Koerper, rested on the premise of having another baby.
Out of the question.
Dr. Koerper knew our history; she’d been Amelia-Grace’s doctor before our reconciliation. I’d had the vague impression that she was pulling for us as a couple, but surely this had nothing to do with that. Surely she was in earnest.
“But,” Brian said, “we’ve assumed that having another baby would risk having another sick baby.”
Dr. Koerper was quiet for a beat. Was this little catch in the plan only now occurring to her? “It is true that we can’t give you reliable odds on your chances of having a child with the same disease,” she said. “But think it over. She’d never need another transfusion. You could go back to being a normal family.”
I suppressed a snort. Back?
My thoughts flew in confused circles, tangling and looping through each other, doubling back. How could we put our daughter into a situation with published survival rates? I didn’t want a transplant for my child, or anyone else’s. But I also didn’t want to have a very sick kid who grew into a very sick adult, if we were lucky.
The one question I’d been afraid to ask, and had put off asking while we searched for a diagnosis, was no longer avoidable.
I made my whole body still and took a breath. “If she doesn’t get better, if she needs lifelong transfusions, what are her chances?”
“I don’t like to give those kinds of statistics,” Dr. Koerper said. “People become very attached to the numbers.”
“Please,” I said, “we know they are just numbers.”
Dr. Koerper looked from me to Brian and back again. “Transfusion- dependent patients, in the last available data, have a fifty percent chance of reaching the age of thirty.”
I thought I might slap her; a short, sharp blow to bring her to her senses.
“Ok,” I said. “We’ll be in touch.” I gathered my purse, Brian stood up and took my hand. I knew without looking at his face that he would be tight-lipped, foreboding, knew he shared my view that Dr. Koerper’s statistics were unnecessarily hostile. Never mind that I’d pressed, almost begged for them. How dare she say that out loud.
I wanted to be with Gracie, immediately. I needed to touch her pudgy hands and smell her thin, silky hair, to inhale her sweet toddler breath. When we got to the lobby we found my mom alternately reading People magazine and watching Gracie cruise around the perimeter of chairs. Gracie was wearing a summer dress with giant pink and orange flowers. As she moved, the hem kept riding up; her small legs, plump and strong, propelled her around the lobby at top speed. What kind of creepy statisticians would bet against such a girl?
I chased her and kissed her and smelled her. She squirmed to get down, as if I’d interrupted her at work. I wanted to whisper in her ear, “You will be thirty. And then forty, fifty, sixty. Eighty! You will be ninety. You will grow so old and decrepit; you’ll be baggy and smelly with decay. Doesn’t that sound nice?”
Walking to the parking garage, hand in hand, Brian and I said nothing. We were suddenly the parents of a girl who might or might not see thirty, and that somehow seemed like a personal failing. We’d made someone defective.
I looked at my daughter. She was plump and pink; humming a wordless, happy opera. She was a baby from central casting.
With a time bomb inside.
From the book HAPPINESS: The Crooked Little Road to Semi-Ever After. Copyright © 2017 by Heather Harpham. Reprinted by permission of Henry Holt & Company, New York, NY. All rights reserved.
This segment aired on August 7, 2017.