By Patti Mengers, Delaware County Daily Times POSTED: 04/05/14, 8:55 PM EDT | UPDATED: 19 HRS AGO 1 COMMENT
When 8-year-old Kimberleigh Shallock learned that her baby sister was awaiting a heart transplant at Children’s Hospital of Philadelphia in 2011, she had one burning question for her parents.
“Will Jillian still know to love us when she gets her new heart?”
Three years later, the Bethel Township resident, who is now 11, has her answer. When Jillian is asked who her favorite sister is, she gleefully exclaims, “Kimba!”
However the toddler, who will be four in July, obviously has plenty of love to go around for her other sisters, 16-year-old Hailea and 8-year-old Keira as well as her parents, Shannon and Bill.
“She goes to pre-school. She goes on field trips. She runs around and plays outside. She likes to torture her sisters,” said Shannon Shallock.
Last week Shannon Shallock stood outside of Children’s Hospital where between 12 and 15 pediatric heart transplants are performed annually, to remind the public of the importance of organ donation as part of Donate Life Month. Because of the generosity of other parents who, amid the heartbreak of losing their own child thought to donate their child’s organs, Shallock’s youngest daughter is alive. More than 1,800 children across the nation are awaiting potentially life-saving transplants according to officials from the Gift of Life Donor Program and Children’s Hospital.
Children’s Hospital was the site of two double-lung transplants last year for 10-year-old cystic fibrosis patient Sarah Murnaghan of Newtown Square after her parents launched a social media campaign to change lung donor protocol that restricted her to rare pediatric donors until she reached age 12. Sarah and another Children’s Hospital cystic fibrosis patient were temporarily put on an adult lung donor list at the beginning of June after U.S. District Judge Michael M. Baylson, in response to lawsuits filed by the children’s parents, ordered U.S. Dept. of Health and Human Services Secretary Kathleen Sebelius to direct Dr. John Roberts, president of the Organ Procurement and Transplantation Network, to suspend a 2005 policy preventing children under 12 from being on an adult donor list, even if they are deemed to be candidates for adult lung transplantation.
The United Network for Organ Sharing is contracted by the federal government to run the Organ Procurement and Transplantation Network. The organization is now reportedly considering making the temporary lung donor policy permanent. Sarah, whose body rejected the first double-lung transplant, is now 11 and reportedly progressing with the second set of adult donor lungs that were down-sized to fit her chest cavity. Officials at Children’s Hospital have declined to comment on the Murnaghan case or the impact of the amended lung donor policy.
However, Karen McCandless, a nurse practitioner in the heart transplant program at Children’s Hospital, noted, “So many children are waiting for organs in this country and so little are available. The need for the number of hearts is growing and the number of organ donors is staying the same.”
McCandless said that Jillian’s case was unique in that she was only 6 months old when she received her new heart and was able to receive a heart from a donor whose blood type did not match hers, otherwise known as an “incompatible heart transplant.” Babies don’t produce isohemagglutinins, the agents that identify blood types, until they are 18 months old, she explained.
“You put the organ in and the body adapts to it. It’s very interesting. It’s miraculous in some ways. It widens the donor pool. We’re not waiting for an exact match,” said McCandless.
She noted that there is no cure for Jillian’s former condition, restrictive cardiomyopathy, in which the walls of the heart are too stiff to pump efficiently.
“A transplant is no cure. It is a matter of being on medicine the rest of your life and at risk for infections, even cancer. At least you have a healthy heart,” said McCandless. “Parents don’t always have to choose transplants. They can just let nature take its course. For her parents it was an easy decision. They knew she would die without it.”
Since receiving her new heart at Children’s Hospital on Jan. 25, 2011, Jillian has basically gone on to live a normal life. When she entered the world at Crozer-Chester Medical Center in Upland on July 21, 2010, it wasn’t clear how long she would survive.
“She was purple. She was transported the night she was born to CHOP by ambulance on a ventilator. My husband followed the ambulance,” said Shallock who headed to Children’s Hospital the next morning after being released from Crozer.
A week later they learned Jillian was suffering from restrictive cardiomyopathy. The next week she was sent home with a cardiac monitor. After Jillian underwent a cardiac catheterization Oct. 21, Shallock noticed her daughter was not sleeping or eating well. In early November during a visit to her pediatrician in Delaware, Jillian turned blue and was transported to Afred I. duPont Hospital for Children in Wilmington where, on Nov. 10, 2010 she suffered cardiac arrest. She was less than 4 months old.
“They shocked her back to life, intubated her and put her on a ventilator,” said Shallock.
Because she works as a registered nurse at Alfred I. duPont children’s hospital, Shallock felt it would be too personal for her to have Jillian as a patient there, plus Children’s Hospital was familiar with her daughter’s history. On Nov. 15, 2010, Jillian was transferred to Children’s Hospital where she stayed until Feb. 8, 2011, two weeks after her heart transplant. Shallock and her husband took different shifts with Jillian at the hospital as did relatives and friends so the Shallocks could also be with their other three daughters and have meals as a family. Shallock sometimes talks to new nurses at Children’s Hospital about that time and notes to them how she and her husband remember it differently.
“My husband would say we lived through the day and enjoyed the time we had,” said Shallock. “I felt like I lived in a haze. My mind is black or white. I don’t like to live in a gray area. I figured we’d list her and she would get a heart transplant or not get a heart transplant. There was no other way to work it out.”
Initially they thought a heart had been found for Jillian on Jan. 16, 2011. The Shallocks and their friends and relatives rushed to Children’s Hospital only to learn from Dr. Kimberly Lin around 4 a.m. just before Jillian was to go into surgery, that the donor heart, upon harvesting, was found not to be a good match. If it had been transplanted into Jillian’s chest, it could have created further problems for her, noted her mother.
“We were sad — sad for the family that agreed to donate the child’s organ, but grateful for the ‘near miss,’” said Shallock.
On Jan. 24, 2011, the anniversary of her long-deceased grandfather’s birthday, she remembers praying to him on the way to the hospital and asking, “God, Pop, can you do something?” Shortly after she arrived, Shallock learned of a potential second donor. Shallock refused to raise false hopes again by contacting her extended family. When her husband, who is a union carpenter, called that day after completing work on the Walt Whitman Bridge, Shallock calmly urged him to come straight to the hospital.
“Everything was much more relaxed,” said Shallock.
At 4:30 a.m. on Jan. 25. 2011, Jillian went into surgery. By 8:30 a.m. Dr. J. William Gaynor had placed a new heart in her tiny chest and her mother was by her side in the cardiac intensive care unit.
“I said, ‘Look, she does have pink cheeks.’ She was noticeably different. She was definitely a little gray before she was transplanted. I guess I never really noticed it. She was ours,” said Shallock.
By 6 p.m., her breathing tube was removed and by 10 p.m., barely 14 hours after receiving her new heart, Jillian was drinking a bottle of Pedialyte.
The first year after her transplant was rough. Because her immune system was suppressed to avoid organ rejection, Jillian had to be hospitalized several times for respiratory infections, stomach viruses and a low white cell blood count. She missed most of her first birthday party because she had a fever.
“We quickly sang, ’Happy Birthday’ and she got to eat a little piece of cake then it was off to the ER,” remembered her mother.
Shallock noticed after Jillian’s transplant that her left hand did not seem to be working well and, when she finally took her first steps at 18 months, that her left foot “looked like it had a mind of its own.”
Because she had taken care of victims of stroke, Shallock suspected Jillian had suffered one. A Magnetic Resonance Imaging test revealed the baby had suffered several.
“We knew that was a risk with transplants,” said Shallock.
Now Jillian takes just two medications a day and the family follows precautions such as asking friends and relatives to get flu shots and not visit if they are sick. They avoid eating at buffets because of not knowing how long the food has been out and they have hand sanitizer stationed throughout the house and with them at all times. Last fall Jillian started attending Little Jags Pre-school at Garnet Valley High School in Concord for two-and-a-half hours a day, three days a week.
“This winter was exceptional for her,” noted Shallock.
Since Jillian’s transplant, the Shallocks have annually assembled “Team Punk-a-poo” — the nickname given Jillian by her father — for the Gift of Life Donor Dash starting at the Philadelphia Museum of Art to raise donor awareness and benefit the Gift of Life Family House for those awaiting transplants. This year it is scheduled for April 13 and includes a kids’ run in which Jillian may participate.
Shallock and her husband have made themselves available for other families awaiting transplants at Children’s Hospital.
“We provide them with reassurance and say, ‘This is what helped us, this is how we got through. Call us if you need anything, even if it is somebody to yell at,’” said Shallock.
Although they do not know the identity of the family who donated their baby’s heart to Jillian, they have written to them via the Gift of Life Donor Program. They have not heard back.
“It is really hard to formulate the words. To say ‘Thank You’ is really not enough,” noted Shallock.
She does, however, have a sense of how donor families feel. Shallock was with a friend recently when her friend made the decision to donate her teenaged son’s organs upon his death at Alfred I. DuPont Hospital for Children.
“She said, ‘I never would have made him an organ donor if not for you.’ I was with her when she filled out the form. It was a very sobering, very humbling moment,” noted Shallock.
Because his mother made him a donor, the teenager’s kidneys, liver, heart valves and corneas were used to help save or improve other people’s lives.
“It really speaks to the strength of a person to say ‘yes’ to something like that right after being told that your son or daughter is not coming home with you,” said Shallock.
Not a day goes by when she doesn’t think about the possibility of Jillian’s new heart failing.
“There’s no way to sugar-coat transplants. Between 15 to 17 years old you usually expect someone with a heart transplant to need a new one. We’re hoping for medical technology to step up its game,” said Shallock.
She is grateful for the friends and relatives who have helped see them through thus far and for her older daughters who have been both protective and tolerant of their sometimes mischievous baby sister.
Jillian, for her part, is glad to explain that because she once had “a dirty heart,” she had to get a new one.
She also never fails to set an extra place for the friend who gave her that heart, when having a tea party with her dolls.
“It’s for the Angel Baby,” says Jillian.
ABOUT THE AUTHOR Having a Heart: Bethel family advocates for life-saving transplants.