The stethoscope placed gently on her chest did not awaken Addy Payne.
She slept—well, like the sweet baby she is—content and calm, her chest rising and falling softly.
Oblivious to the adoring looks, the hopes, worries and plans of the adults who gazed upon her.
Heather Sowinski, DO, stroked Addy’s head and turned toward her mom with a smile.
“The echocardiogram looked great,” she said.
A little sigh of relief.
So much has led to this almost-routine checkup for Addy, a blue-eyed, pink-cheeked 3-month-old baby girl.
“She has made it through two heart surgeries already,” said her mom, Rachel Payne. “She is very strong. Very resilient.”
More challenges lie ahead.
But Rachel counts on her daughter’s strength and a wide net of medical and family support to help them through those next steps.
Coming full circle
Like her daughter, Rachel knows something about being a survivor.
At age 20, she learned she had cancer. Her doctors diagnosed her with diffuse large B-cell non-Hodgkin lymphoma in her knee.
She received treatment at Spectrum Health Helen DeVos Children’s Hospital and ultimately won in her battle against cancer.
Now as a director of human resources at Spectrum Health, she supports the programs that saved her life.
The first sign of the challenges in store for her daughter, Addy, came in 2021, when Rachel was pregnant.
She and her husband, Eric, had a daughter, Audrey—now 3—and they eagerly awaited the birth of their second child.
A routine 20-week ultrasound revealed a potential heart defect. Rachel and Eric began to see Spectrum Health maternal fetal medicine specialists.
And they met Dr. Sowinski, a pediatric cardiologist with the The Karl and Patricia Betz Congenital Heart Center at Helen DeVos Children’s Hospital.
Scans showed Addy had a hole between the two lower chambers of her heart, called a ventricular septal defect. And she had coarctation of the aorta, a narrowing of the vessel that carries blood from heart to the rest of the body.
“The heart has to work harder to push past that narrowing,” Dr. Sowinski said. “That’s why we have to do surgery to remove that narrowing, to make sure blood can easily get to her body.”
An unexpected challenge
Because she was in a breech position, Addyson Payne arrived via C-section at 38.5 weeks, weighing just under 6 pounds. Her parents soon called her by her nickname, Addy.
Rachel and Eric knew her first heart surgery would come soon. And they braced for it.
But Addy had more surprises in store.
Her medical team soon discovered her esophagus and stomach were not connected. And there was an abnormal connection between her breathing and feeding tubes.
The condition, called esophageal atresia with tracheoesophageal fistula, is life-threatening.
“That took precedence,” Rachel said. “On Day 2 of life, they did surgery to connect them all.”
Pediatric surgeon James DeCou, MD, performed the four-hour surgery.
Meanwhile, Addy received an intravenous medication to treat the narrowing of her aorta as a temporary solution.
A few days later, Addy returned to the operating room, this time for surgery on her heart.
Marcus Haw, MD, a congenital heart surgeon and co-director of the congenital heart center, removed the narrow part of her aorta to ease the blood flow from her heart. And he placed a temporary band around the pulmonary artery to relieve pressure caused by the hole between the lower heart chambers.
A few days later, she underwent surgery again to tighten the band, so it would provide better control for her symptoms.
Bravery beads, once more
Addy spent her first 44 days in Helen DeVos Children’s Hospital.
Through that time, the Payne family relied on the Child and Family Life program—a service that Rachel knew well.
She still has the string of bravery beads she received during her cancer treatments. Each colorful bead marks an event, a procedure or a big milestone in her journey.
When Addy was a newborn in the NICU, Child Life specialist Theresa Hartl helped Rachel begin a collection of bravery beads for her daughter.
Although Addy is too young to remember the ultrasounds, lab draws, echocardiograms and surgeries, the beads can help her parents explain her hospital experience to her one day.
“The bravery beads are a tangible way for a child to reflect back on something they don’t have a concrete memory of,” Hartl said.
She also took photos and helped create a journal of Addy’s first days.
Within a few days, Addy moved to the cardiac intensive care unit.
It was February—heart month—and celebrations included a heart team swaddling blanket and gifts for Audrey, her big sister at home, Child Life specialist Leah Nawrocki said.
“The Child Life team was outstanding,” Rachel said. “They made a book of what Addyson’s hospital stay looked like and her room at the hospital—to help explain to Audrey where her sister was.”
The work of the Child Life specialists helps “to normalize their child’s diagnosis,” Nawrocki said. “We want them to be able to feel empowered and to know their child’s health care needs and to share that with their other kids.”
The specialists encourage parents by suggesting calming techniques for their babies during medical procedures—offering a finger to hold, singing or providing a sweetened pacifier.
And they provide developmentally appropriate toys, mobiles and books that parents can use with their children.
For Rachel, the Child Life specialists provided an unexpected connection with her own medical experience.
“It is so cool to see the traditions play through,” she said.
An open-heart surgery
Once she came home from the hospital, Addy received physical and occupational therapy to help with development. On a feeding tube at first, she soon was able to switch to bottle feedings.
“Other than her weight, she is still meeting all her milestones for her age,” Rachel said.
At 5 months, she weighed a little over 11 pounds. It was time for the next big step.
Addy returned to the hospital, and Dr. Haw performed open-heart surgery—to repair the hole between her lower heart chambers and remove the band on her pulmonary artery.
Although this was Addy’s first surgery that required a bypass machine, Rachel and Eric approached it with a positive mindset.
“We went into this knowing this one will fix her heart,” Rachel said. “Prayerfully, it is her last big one.”
And they felt on familiar ground in the hospital and confident in the team who cared for Addy after her surgery.
“It is comforting to know when I am not in the room that she is literally in the best hands ever,” Rachel said.
‘An adorable little girl’
In her first months of life, Addy’s parents learned she has VACTRL association, a condition that encompasses several birth defects.
For Addy, that includes microtia of her left ear. The ear is small, and she cannot hear out of it.
“One day, she may get some sort of implantation or hearing aid,” Rachel said.
But for now, Addy’s daily routine is just as it should be: growing, eating, sleeping and playing.
“She is doing really well,” Dr. Sowinski said. “She is an adorable little girl. And her parents have done a great job taking everything in stride along the way.”
Rachel and Eric enjoy watching Addy’s personality emerge.
Inquisitive and playful, she smiles and laughs readily. She loves to be held. And she adores watching her big sister.
“She is such a joy,” Rachel said. “It is really wonderful when I see both girls playing—and just simply thinking back on how much this little girl has already tackled so far in life.”
Addy has had an amazing journey with lots of prayers from folks all over the country. She is part of a wonderful family that loves the Lord and puts their faith in Him.
Many thanks to all the wonderful Doctors and Staff that have treated and cared for Addy on her journey.
Thank you, Sue, for writing up this story of a beautiful little girl’s challenges. God bless Addy and her parents with strength for the journey and encouraging reports and results in her care. Harvey
It was wonderful to meet Addy and learn her story. She is a beautiful girl blessed with amazing parents.
We have followed Addy’s journey almost since the beginning. Knowing this family the strength they do in their daily lives Addy is in the best place for an incredible journey. This family and friends are with her every breath she takes. She is a fighter like her family. There is no doubt in my mind that she has God with her on this journey and an enormous team of both medical, emotional and spiritual support. Bless all of you for every step sje has taken on this journey. Bless you both mom and dad with all your love to Addy. We look forward to hearing of her growth along this journey. We are with you in prayer. Bless you all.❤️🙏
Addy is such a fighter, such a strong little warrior! I know in my heart she will do great things and make her family proud, as she’s already doing! Rachel, you know more than anyone & I think she does too now, the work is worth it! She’s already a tiny little champion and it’s been amazing watching and reading about her journey thus far. Bless all of you <3 sending you the biggest hugs.