“I just can’t wait to put ribbons in my baby’s hair,” says an excited Talonda, mom to Aaryn as she packs up to leave Johns Hopkins All Children's Hospital just five days shy of the baby's first birthday. “Pretty soon she won’t be hooked up to all of these machines and wires anymore,” she adds as she squeezes a soft round baby thigh into pink cheetah print pants with a bright matching shirt that makes up Aaryn’s hospital-exiting outfit.
Aaryn’s corner room, normally quiet and a bit removed from the cardiac unit, is a hustle and bustle of activity as she prepares for discharge. Nurses, case workers, family members and Aaryn’s medical foster family come and go. Cell phones are buzzing and baby Aaryn sits up straight but wobbly in her crib, confused, but clearly entertained by it all.
“I can’t wait to hear her voice,” Talonda adds at the time near her November discharge. “She wasn’t able to make a sound and now her vocal cords are still recovering from the breathing tube.”
We knew at 33 weeks that Aaryn had a heart defect.
Aaryn's journey has been a long one, requiring not only expert pediatric clinical care but support and training for her family both during and beyond her hospital stay. The hospital provided support to overcome barriers and made sure she was able to sleep bedside in the CVICU or at a nearby Ronald McDonald House in order to be close to the baby.
“Aaryn was born with complex congenital heart disease,” explains Aaryn’s pediatric cardiac surgeon, Jeff Jacobs, M.D., co-director of the Johns Hopkins All Children's Heart Institute. “She was initially treated with several operations and ultimately required cardiac transplantation.”
A heart transplant. It was a harrowing first year on the planet.
“We knew at 33 weeks that Aaryn had a heart defect,” Talonda explains.
Talonda herself had preeclampsia and was at Johnnie Ruth Clarke Community Health Center for high blood pressure when the news came that something was wrong with the baby’s heart. Talonda and doctors decided to transfer Aaryn to Johns Hopkins All Children's after birth. Talonda toured the cardiovascular intensive care unit (CVICU) ahead of time so she would know what to expect.
“All of the doctors met with me and explained everything,” she recalls.
Because Talonda and James, Aaryn’s father, were struggling financially throughout the pregnancy, several agencies stepped in to assist the family while they found a place to live and secured steady jobs. They work closely with the hospital’s Heart Transplant Committee, which includes social workers, palliative care physicians, Child Life specialists, pharmacy technicians, transplant coordinators and program directors. Johns Hopkins All Children's has performed more than 180 pediatric heart transplants, and U.S. News & World Report ranks it among the top 50 nationally in Pediatric Cardiology and Heart Surgery.
Early on, the palliative care team stepped in. Often thought of as end-of-life assistance, palliative care has many functions, including acting as a liaison of sorts between the medical staff and the parents.
Palliative Care Acts as an Advocate
“Palliative care is the advocate for the patient and support for the family," explains Sue Sreedhar, M.D., critical care and palliative care physician. "We coordinate the care for the best outcome for the patient. This may involve setting goals of care, understanding the family dynamics, grief-counseling and anticipatory guidance, preparing the family for discharge home, and teaching them self-care so that they can continue to preserve themselves during this difficult journey. This results in families becoming comfortable with the care that they need to provide for these medically complex children.
“We got involved soon after Aaryn’s birth due to her diagnosis and the prolonged hospital course that was anticipated. Children with a complex heart condition like hers usually need multiple medical interventions,” she continues. “This requires families to make those decisions at the critical moment. Palliative care is there to support these families during those acute conditions.”
With multiple cardiac surgeries, Aaryn had a prolonged hospital course filled with ups and downs, Sreedhar explains.
“Child Life, social work, and palliative care worked with Talonda continually to support her through this journey,” Sreedhar says. “We saw her grow from being a new mother completely unprepared for these complex medical issues to becoming empowered in making decisions over her hospital stay, preparing her life and home to have a stable environment for Aaryn to go home to, with good outcome, after the transplant surgery.”
There are only a very few heart transplant programs in this state that can provide this level of multidisciplinary care for a child.
Sue Sreedhar, M.D.
Aaryn’s heart transplant was completed successfully on Aug. 25, 2017. Talonda “literally lived in the CVICU” for just under the year that the baby was there.
Talonda and James are dedicated to doing what is right for Aaryn. They recognize that a child with Aaryn’s medical needs requires two caregivers and a stable home environment. They have been working to prepare a home that will be suitable for a heart transplant patient.
In the meantime, a medical foster family has assisted in caring for the infant as she recovered. Chip and Annette have kept Talonda involved as Aaryn heals. They talk on the phone and she Skypes with Aaryn every day. Talonda attends medical appointments and has been involved in every hospital training session she can take so she can learn to care for Aaryn’s medical needs.
It isn’t easy.
“We see her cardiologist every week,” Annette, the medical foster mother, explains. “She has been off prednisone (a steroid used for immunosuppression) for a month. She has regular biopsies to check for organ rejection. Aaryn has other issues as well. She is on anti-seizure medicine. She has a shunt from a previous brain swell, and she will eventually be weaned off blood pressure medicine. She still has a feeding tube but is starting to eat on her own. She is in physical, occupational and feeding therapy. It’s a lot of running around. Her medical treatment is extensive.”
Aaryn's development is a bit delayed due to all the surgery, but she is catching up. She is sitting up and is now starting to say “mama” and “dada.” She sees her regular pediatrician at Bayfront Health weekly, which is close enough that Talonda can join. Talonda works at night, freeing her for clinic and doctor’s visits.
Chip and Annette are dedicated to helping each child they care for with the goal of getting each one back to their families as quickly as possible, wherever possible. “We know that Aaryn does better when she sees her mom," Annette says. "We leave communication open, and our phone is always available. You don’t want to break that bond with the mom. As long as they are safe and happy, we just want what is best for them.”
Meanwhile, Talonda is accomplishing all of her goals, creating a welcoming home and hopes to bring Aaryn home soon. Talonda met with Aaryn and her medical foster family recently to take pictures for this story and couldn’t resist picking up a frilly white dress for her daughter’s first photo shoot.
Ribbons waiting, Talonda wakes up every morning eager to fix up baby Aaryn’s hair and hear that beautiful word every day.
Visit HopkinsAllChildrens.org/Heart to learn more about the Johns Hopkins All Children's Heart Institute.
Heart Transplant Program at Johns Hopkins All Children's Hospital
Johns Hopkins All Children’s Heart Institute provides comprehensive pediatric and congenital cardiac care to patients of all ages, ranging from the fetus to the adult with congenital heart disease, and also provides pediatric heart transplantation. Our pediatric cardiology and heart surgery program is ranked by U.S. News & World Report as a top 50 program.