Diary by Bernadette Chapman
Photography by Liesa Cole
Sadie Chapman is supposed to be in New York City right now, doing whatever it is aspiring actresses studying at the Lee Strasberg Institute of Film and Theatre do.
Her heart was in New York, there in her Lower East Side apartment, out on the streets bathed in that golden New York light that speaks in a special voice to those inclined to listen to a siren call of excitement, drama, and pending fame. Inclined to dye their hair purple. “Come on, kid. It is all right here,” it says. “Come get it.”
Then her heart decided it was time to come home to Birmingham and Children’s Hospital of Alabama—temporarily, she hopes. And when she heals, she wants to return to a life she was just settling into, before becoming a girl, interrupted by her heart.
It isn’t the first time. That was back in 1997, just nine months after she was born to Gary and Bernadette Chapman. Born with a Hypoplastic Left Ventricle (basically without a functioning left ventricle), Sadie’s young heart was repaired then, and once again, when she was 9 years old. In the years between then and now, Sadie lived normally, graduating and moving on to her future life, as an actress in New York.
“I feel like acting is what I am really good at,” Sadie says, sitting next to her parents in the lobby of Children’s on the city’s Southside. She is here at Children’s because over the winter in New York, her heart, repaired all of those years ago, began giving her trouble. She was retaining fluid at such a rate that she gained 30 pounds. She was weak and tired.
A trip to the hospital in New York convinced everybody she needed to come back to Birmingham for the best option left for her: a heart transplant. As this is written at the end of May, a few days before Sadie’s 19th birthday, she has been at Children’s for nine weeks, waiting for a heart.
“My whole life has been about wanting to become known for the stuff I want to be known for…acting. I don’t want to be identified as the heart patient,” Sadie says.“Physically, I feel fine. I would like to be out and doing stuff and I can’t. I feel locked in a box.”
So Sadie sits at Children’s, waiting for an event that could bring her the chance for the full life she dreams of. She makes friends with the staff and other patients, but still spending her days mostly waiting.
Her parents, Bernadette and Gary, wait with her. Gary, an art professor at UAB, says the doctors are waiting for the right donor heart to become available.
While taking turns waiting with Sadie at the hospital, the couple has also made strides in creating a network of support among friends and family, as well as a fundraising plan to offset the prodigious expenses of a transplant.
“While we have fantastic insurance through UAB, the deductibles will add up; doctor visits, medications, biopsy surgeries,” Gary says. “We have also been charged with thinking long term in planning for when Sadie has to step off of our insurance and live a long and healthy life. The Transplant Team Social Worker introduced us to COTA (Children’s Organ Transplant Association) and highly recommended that we set up this account in honor of Sadie. COTA is a 501C3 organization, so gifts are tax deductible to the fullest extent of the law. Furthermore, 100 percent of the donated funds go directly to COTA in honor of Sadie for all transplant-related expenses throughout her life.”
Family friend and Birmingham businessman Jay McKinney is heading up the fundraising effort. “Costs can be staggering. Anti-rejection medication can run $5,000 to $8,000 monthly. And that will be for the rest of her life.
“We are running a marathon, not a sprint. The goal is $100,000. I hope to raise that and start again. COTA will always manage the funds carefully for the family, reimbursing approved, appropriate expenses. So for the rest of Sadie’s life, COTA will be there for her,” McKinney says.
According to COTA, no insurance plan covers all transplant-related expenses, which are significant. Transplant costs vary tremendously based on a number of factors, but generally transplants can cost anywhere between $250,000 and $800,000. These costs do not include family needs like lodging, food, and transportation during the transplant stay. Additionally, post-transplant medications and medical care costs often add up to more than $10,000 annually. Most insurance providers require a family to pay an annual deductible that can exceed $10,000 and require a copayment for each visit to the doctor, clinic or for individual medical tests. No plan pays all transplant-related expenses and even a “solid” insurance plan may only cover 80 percent of the “normal and customary” expenses incurred within a pre-determined network or at a specific hospital. Even with insurance coverage, very few transplant families have the resources to meet these tremendous financial demands. When faced with the burden of a child’s potentially fatal diagnosis, most families need help.
The Chapmans are no exception.
They are waiting together, all three perched on a table and bench at one corner of the large, colorful Children’s of Alabama lobby. Waiting for that moment when Sadie’s heart beats free of this burden.
Another Day Closer
A diary of heart sounds.
By Bernadette Chapman
“Buuurrrr versh,” the sound of the hand sanitizer outside the door.
Gentle knocking; it must be morning shift change. Whispers, beeps, whurrs from across the room. I roll over. Another day.
I wake, check email and Facebook on my phone. Sadie, my 18-year-old baby, is gently sleeping in her hospital bed, clutching her Eeyore, tethered to an IV pole, wires attached to her chest. Someone, somewhere watches her heart rate 24/7. It’s day 50 something, almost two months into our wait for a new heart. I get up, find my slippers and my husband’s Tabasco coffee cup, and head down the hall to the family kitchenette. I pass the nurses station: “Morning Earl, morning Elaina.”
“Is Sadie awake yet?”
At the Keurig-type coffee machine, I’ve mastered the perfect cup. Two bags of regular coffee with one shot of espresso and a little packet of powdered creamer.
On the way back to Sadie’s room, I nod and smile to my new friend, B. “Another day closer.” She’s carrying her coffee cup, wearing sweatpants, with her long blonde hair tied in a ponytail. B’s been here one week longer than we have. Her baby, J, is waiting for a new heart as well. He and Sadie have developed a magical relationship, while nine years apart in age, they are kindred spirits and partners in crime on the eighth floor of Children’s of Alabama hospital.
I sometimes feel guilty for enjoying the quiet mornings, reading my book, drinking coffee, watching Sadie sleep.
Sadie wakes, the day nurse brings her her morning meds and takes her vitals once again. Yay! Sats at 93 and a decent blood pressure.
Sounds of the eighth floor waking up. Children’s voices. I hear J ask a nurse if Sadie is awake. Sadie hears him and pushes the nurse button.
“Can I get unhooked so I can change?”
“Be right there.” They have to unhook Sadie’s IV, which drips Milrinone into her heart, so she can change clothes. When they do, she feels free and wishes she could run up and down the halls for an hour. They give her 10 minutes.
The first game of Trouble or UNO or bowling or t-ball down the hall for Sadie and J. I get cleaned up, eat whatever Sadie didn’t on her breakfast tray, and decide to work remotely from the hospital today; things aren’t that busy at the office and my boss understands.
Gary arrives with his overnight bag. It used to be just a gym bag, but we have now have a new normal. He’ll be sleeping at the hospital tonight. Kiss good morning and he goes out to the little play area at the end of the hall to hang out with Sadie and J and B.
That’s enough bookkeeping for the day, so I go see what the kids are up to. Singing to “My Big Green Tractor,” J’s favorite song. Gary is drawing hearts on his latest cathartic drawing series. Artists have to do something, and he has the heart kids on the floor color in a heart or two in each piece.
J gets tired and heads back to his room. Sadie goes to see what the nurses are up to. “Where’s Russ? I gotta find out about how the book Game of Thrones is different from the latest episode.”
Doctor rounds. They listen to Sadie’s heart.
“How you feeling?”
“You need anything?”
“It’s another day closer. We’re waiting for the perfect one.”
Lunch arrives. If it’s Wednesday, “Can we go to the food trucks outside?”
Lauren, Sadie’s PT arrives. “Ready?” “Yep!” Off they go to do yoga or the treadmill or I don’t know what. Lauren is a godsend.
Back from PT and J is up and looking for Sadie. Let’s go to the Harbor for crafts, or the zoo might be coming to visit with some animals. This hospital is amazing with all the activities for the kids. Making bracelets out of plastic beads may not be high on the list of fun things to do for an 18-year-old who was just in New York going to acting school four months ago, but she does it now, especially if her bud J wants to. And it brings her joy to see him smile.
Back on the floor, more vitals taken, maybe an IV bag changed, another game of Trouble. Gary runs home to our apartment 10 blocks away to make dinner.
Gary returns with big salads, which include steak he grilled up for us. J is excited but he doesn’t eat. Sadie and J make plans for after dinner. The Harbor for a couple of games of air hockey, The Claw machine to win more Beanie Babies, then to the fountain outside so they can get their hair wet. I head home cause it’s my “night off.”
I know what happens, even if I’m not there. J & B head to their room for the night. Sadie’s night nurse checks in, more vitals and meds. Gary and Sadie settle in for a movie. I do the same, and find that half bottle of wine in the fridge.
Alarm goes off, NPR comes on, coffee smells come from the other room. I must be home. I get my cup of coffee and realize the phone did not ring during the night. It’s another day closer.