“A better life ahead” for transplant patients

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

After 42 years at Riley Hospital for Children, Sandra Kennedy still gets caught up in the wonder of it all.

The medical breakthroughs.

The lifesaving care.

The family focus.

The kids.

“When I first started as a nurse, I wanted to be in a place where you were learning and discovering and not just reacting to what everybody else did,” she said. “I wanted to be where the action was.”

That place, for her, was Riley. She has spent her entire career here, a nurse for most of that time and a nurse practitioner for the past 16 years. Many of those years were spent in the pediatric ICU, which is where she first began taking care of transplant patients.

For the past four years, she has been part of the GI team caring for liver and multivisceral transplant patients on 9 West.

Described as “the backbone” of the GI transplant team on the unit by her colleagues, Kennedy, married to a high school guidance counselor and mother of three, has a passion for her patients, many of whom have battled serious illness for years.

With transplant, she said, “You get to see them progress from being so sick … going from a really hard life where they are suffering, to a life where they look and feel so much better.”

Count Annaka Salazar among them. The 18-year-old Beech Grove High School senior has lived with a bad liver her entire life and has been a Riley kid all that time.

She was born with biliary atresia, a rare liver disease in newborns where the bile ducts, which normally carry bile from the liver to the intestines, are blocked or absent. The blockage prevents bile from draining properly, leading to liver damage.

While medications and surgery can help treat the condition, an estimated 80% of those with biliary atresia will require a liver transplant by the age of 20.

Now nearly a month out from transplant, Annaka is home with her mom, Amber, and her dog, Mila, feeling like a new person and ready to graduate from high school and start college in the fall.

“There’s a better life ahead” for these patients and their parents, said Kennedy. “That’s the rewarding part for me.”

“I really enjoy pediatric care because you get to care for the whole family,” she added. “The kids are really great, and this gives them the opportunity to have a great life.”

Once they have a transplant, “they look better, they grow better, their nutrition is better, and their activity is better. It is so good to see that progression,” she said.

Advances in surgical techniques and medications have helped improve outcomes for transplant patients over the years. But the need for organ donors is great.

“It truly is a selfless gift that everyone should speak to their family about,” Kennedy said. “It is offering life to someone who didn’t have that possibility before. They could have died of biliary atresia within two years, but now they can live a full life.”

The organ transplant programs at Riley are part of IU Health Transplant, which offers a living liver donation program. The liver is the only organ in the body that regenerates to its full size.

A liver from an adult living donor can be split, with a portion growing back to normal size for both the donor and recipient. This is similar to when a liver from an adult deceased donor is divided and transplanted into two patients, with a smaller portion going to a child, and the partial transplanted liver growing to a normal size in the body in time.

At death, those organs are no longer needed by you, Kennedy reminds us.

“You have the opportunity to make a big difference in someone else’s life – to let them live. I would hope everyone would think about organ donation, consider it for themselves, and most of all, let someone know.”

Unlike the adult transplant world, Riley does not have a huge volume of liver or multivisceral (multiple abdominal organs) transplants each year. There were approximately 11 last year, Kennedy said.

IU Health transplant surgeons Dr. Richard Mangus and Dr. Chandrashekhar Kubal perform pediatric transplants at Riley.

Kennedy then follows those patients after transplant while they are still in the hospital and when they return for checkups. It’s a system that works well, she said, and offers the opportunity for full collaboration among the transplant team, including nursing, education, social work, nutrition, child life and psychology.

“The staff here is so supportive, especially on 9 West,” Kennedy said. “They suffer along with the families when they’re going through a rough time. We as a group try to get through things together.”

That sometimes includes the loss of patients. Those children are never forgotten, she said.

“They fought so hard for so long.”

And that is why Riley is so important, she said, because when kids are here, they get to be kids – to play and learn and accomplish things.

“We treat the whole person, and we are not afraid to show emotion and feel those feelings,” she said. “We make a difference in their lives.”

Kennedy, who grew up in Anderson and fell in love with medicine and the idea of nursing as a form of service at a young age, said there is no place like Riley.

“Every family out there has been touched by Riley in some way. We can do so much, and we are so lucky to have Riley here in our own backyard.”

To register to be an organ, eye or tissue donor, visit RegisterMe.org or DonateLifeIndiana.org/signup.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org