Choosing Your Transplant Family

By Catherine Herridge, member of the Transplant Auxiliary of Children’s Hospital of Pittsburgh Foundation. This blog was prepared as a service to families dealing with organ transplantation. Catherine’s son Peter is a liver transplant recipient.

“She’s a rock star.”

hp6Hailey Puleo says nothing can stop their 9-year old daughter Acacia.  “She’s a double black diamond skier, surfing.  She’s probably doing the trampoline right now. She believes she can do anything!”

Eight years ago, Hailey says her daughter was blessed with a second family.  In addition to her mom, dad and three siblings, Acacia was embraced by Children’s Hospital of Pittsburgh of UPMC.

Performing more than three thousand pediatric transplants since 1971, with top survival rates, Children’s Hospital is the leading choice for families who travel out of state to give their child a second chance.

“You don’t realize that transplant is a decision for life,” Hailey says. “It is a life-long relationship with your transplant team.” From the surgeons and nurses, to the staff who recognize each member of their family on return visits, the Puleos couldn’t have imagined the impact that this new family would have on their lives.

hp1Within hours of Acacia’s birth, her parents were told that a rare intestinal disorder required urgent surgery.  Left with just inches of her small bowl, Hailey and her husband were told that Acacia had no future.

“We were given two choices.  We could pull the plug or we could commit Acadia to a life of suffering and end stage liver disease.  We couldn’t accept either for our child.”

The Puleos are fighters. They made phone calls.  They searched the web.  They reached out to anyone who could help. One day, when it seemed despair was setting in, a doctor pulled them aside.

“He said he trained in Pittsburgh and if we wanted to help Acacia we should take her to the best center with the most experience and that was Children’s Hospital of Pittsburgh.” As the first and busiest pediatric transplantation program in the nation, Children’s Hospital has more experience and expertise, plus an ongoing commitment to research and innovation.

That can do spirit is clear to Thomas Starzl, MD, PhD.  Known as the father of transplantation, Dr. Starzl chose Children’s Hospital of Pittsburgh of UPMC more than 30 years ago for his revolutionary work.

“The pathfinders were the children, “Dr. Thomas Starzl emphasizes. “Without a lot of lofty meetings and discussion, a decision was made that the Children’s Hospital would be at the forefront.”

George Mazariegos, MD, chief of pediatric transplantation at Children’s, is carrying on Dr. Starzl’s mission.

“Transplant allows so many kids to realize what they were made for.” Dr. Mazariegos explains. “The clinicians and doctors and nurses who are privileged to see the journey — we are reminded of why we are here.”

Meet Our Family at the Children’s Hospital of Pittsburgh of UPMC

Like so many families facing organ failure, to get their daughter healthy, the Puleos make hard choices.  With her husband working in New York City, Hailey moves to Pittsburgh with Acacia and waits for the transplant.

At the time, Hailey is seven months pregnant.  With no friends or relatives nearby, the hospital staff becomes Hailey’s support network.

“If it hadn’t been for the staff at Children’s, I would have felt completely alone.”

Hailey finds a local ob-gyn with help from one of the floor nurses.  Acacia’s brother Dirk is born in Pittsburgh two and a half weeks before his sister gets her life-saving transplant: a small bowel, pancreas, and liver.

“They helped with the birth of my son and our transplant coordinator had all our kids’ pictures on her wall – not just Acacia’s.  That is the difference between Pittsburgh and other hospitals.”

Parents at Children’s have memories of the transplant experience unrelated to clinical care such as a housekeeper who while delivering clean linens takes time to comfort someone in need or the cafeteria staff cheering the first time a child can make it from his or her room for a special meal.

Transplant affects every member of the family, not just the child who is sick.  For Ty Davidson of Madison Mississippi, it means his father John will become the organ donor.

“It was their whole approach that made us confident about being there,” Marisa Davidson explained that it also calmed their fears.  “They are real down to earth people and highly skilled.  They embraced our family.”

ty_clip_image002When Ty is two and a half months old, he is diagnosed with a rare form of liver disease called biliary atresia.  The shortage of organs for children, especially infants, is acute.

Many families choose the living donor option because the transplant team can operate sooner when the child is relatively healthy. A stronger child may improve post-surgery outcomes.

Children’s Hospital of Pittsburgh of UPMC is one of the best centers for living donor liver transplants in the country.  Survival rates are among the highest in the world.

“We wanted to be in a hospital where we could go from start to finish and that was Children’s.”

Based on three decades of experience, the hospital staff knows time is not on the Davidson’s side.  When the family arrives in Pittsburgh, doctors insist on evaluating Ty and his dad for a living donor option.

After a series of tests to safeguard John’s welfare, surgeons remove 20 percent of his liver.  It is a miraculous surgery because the liver grows back in the donor and it functions as a healthy replacement for the child’s diseased organ.  The new liver will grow with the child into adulthood.

The challenge of caring for Ty, who is only four months at the time, her husband, and their nearly 3 year old daughter Malee is possible with the support of their second family at Children’s Hospital.

“I could not take care of both of them,” Marisa Davidson recalls.  Ty was in a Pediatric Intensive Care Unit and her husband John was in the adult Intensive Care Unit at another hospital.  The hospital also offered transportation through a bus service linking the hospitals.

When Ty, now five, has complications, Children’s Hospital has the specialists to problem solve.

“It was reassuring to feel that everyone who touched him was a part of a real coordinated care team.”  Marisa says.  “We consider some of them part of our transplant family even though transplant is not their primary area of expertise.”

One year, when the Davidson’s unexpectedly spent Christmas in Pittsburgh, the hotel staff bought both children presents.   It wasn’t just the hospital, but the entire community that wrapped its arms around the Davidson family.

“Whether it is the taxi driver, hotel shuttle drivers, the stores, or museums we visit, the people in the community feel very proud of the hospital.  They are so interested in the patient’s well-being.”

Children’s Hospital of Pittsburgh is the also only pediatric hospital in the country to have a Ronald McDonald House directly on the campus.  Through generous philanthropy, many families receive help with non-medical services such as transportation and housing.

“Caring for a kid really does mean caring for their family as well,” Dr. Mazariegos knows first- hand that the whole family is going through the transplant.

From the highly skilled surgeons who are leaders in transplant research, to the experienced nursing staff to the caring technicians, Dr. Mazariegos and his team are there every hour of every day.

“It is hard to imagine doing anything well in this field without the whole team contributing.”

John Carlson of Minneapolis, Minnesota feels the same push and pull of the Davidson’s. When his youngest son urgently needs a new liver, John doesn’t know if Brady will survive.  And he also worries about the impact on their oldest son, Brady’s older brother, Owen.

?????????????????????‘We would meet Brady’s brother off the school bus and then my wife and I would switch places.   She was at the hospital with Brady or I was at the hospital.  We never did anything as a family.”

By the time the Carlson’s temporarily move from Minneapolis to Pittsburgh, Brady’s options are limited.  Not even a year old, Brady’s first transplant performed in Minnesota has already failed.  Now, he is waiting for another organ in Pittsburgh.

Children’s Hospital of Pittsburgh of UPMC not only accepts the most complex and difficult cases, but also embraces them. Children’s Hospital of Pittsburgh receives referrals from physicians around the world, because they know and respect the team’s multidisciplinary approach.

“They don’t give up.  Brady was a difficult case.  The team at Pittsburgh is so optimistic they can help anyone.”

The Carlson’s bring their oldest son, five-year old Owen, out to Pittsburgh.  While mom and dad help Brady upstairs in the hospital, Owen is at Children’s Sibling Center downstairs.

The Lemieux Sibling Center at Children’s Hospital is one of a kind. It is designed to keep families together as much as possible, like many of the other amenities of the new, state-of-the art hospital opened in 2009. It combines advanced technology in a spacious, colorful, and kid-friendly environment to offer the highest standards of pediatric care.

“It made all the difference to us, to Brady and to Owen.”  John says.

That same hospital family spirit was evident to Dr. Starzl in the early days of pediatric transplantation.  Pittsburgh was doing successful transplants and the word was spreading.  Families came from across the U.S. and as far as Australia to help their kids.  Many could not afford a hotel for the long stays.

“An SOS went out, “Dr. Starzl proudly explains. “People started bringing in these patients into their homes…and friendships were set up that even endure to the present day. They were just swept into the arms of these different families, so it was a wonderful thing for the city. “

Dr. Mazariegos, who has more than 25 years of experience, with nearly two decades in transplantation, says the Children’s family always puts their patients, their moms and dads, and their siblings above all else.

“This was a commitment to a lifetime relationship of care and follow-up that Dr Starzl instituted and that we still do today. It also was a natural “fit” to work with the kid’s families and learn about how to help them.”

The Transplant Family’s Future

hp4Acacia Puleo is nearly 10 years old.  She is full of hope and the expectations of high school are looming.  Brady Carlson and Ty Davidson see kindergarten and first grade on the horizon.  They are all trailblazers.

“The children were our teachers,” Dr. Starzl says, looking back over three decades of success. “They were in and of themselves investigators and they became the means by which we learned about how the immune system actually functions.”

While death seemed a certainty two years ago, Brady’s dad now sees a future.  It may not always be easy, but Jon Carlson, his wife and two sons know they can depend on their second family at Children’s.

“Our local hospital (after 18 months and one not-so successful transplant) told us to bring him home on hospice care.” Jon said Children’s Hospital of Pittsburgh of UPMC never gave up on their son.

“Pittsburgh fought our hospital and insurance to save him.”??????????????????????????????????

Having spent so much time in the hospital, Brady needs extra help. He is going to occupational therapy and speech therapy to catch up.  His parents are rejoicing in his steady progress.

John Carlson says he doesn’t know what the future will hold for Brady, but he knows the doctors in Pittsburgh will be there for their whole family.

“We wouldn’t be the “whole” family we are today without them! We are in this for the long term with Children’s.”

Five-year old Ty Davidson is also thriving.  His special bond with his dad, who donated a liver segment for his son’s transplant, is growing stronger with each passing day.

“He’s into everything,” Ty’s mom Marisa marvels.   “He’s outdoors with his dad all the time. They are hunting and fishing together.  He wants to be right there with dad just like any little boy.”

ty_ clip_image001Marisa says the Pittsburgh team treats Ty like one of its own kids. The doctors and staff can’t wait to see him for the annual check- up.  The doctors keep tabs on the kids’ activities, and attend their graduations and weddings.  They are so proud of their progress.

“They are so involved and so interested. They are used to success stories.  These surgeons could work anywhere in the world and they choose to work for Children’s.”

Acacia Puleo’s family has a simple goal.  “To keep our daughter healthy until medical science catches up with our expectations,” Hailey explains. “Hopefully that means low doses or no doses of anti-rejection drugs. “

From an early age, the Puleos talked to Acacia about the transplant.  They say it is an incredible gift from the donor family.  Every day Acacia should be thankful.  Every day, the gift of life should be respected and enjoyed.

When Hailey talks about her daughter, the conversation always comes back to her second family in Pittsburgh.

“These people have given us our daughter and have taken us in times of need – not just medically but emotionally. This is the difference.”

“Children’s is a unique place,” Dr. Mazariegos adds. “I can’t imagine putting together a finer team of folks. This means everyone from the nurses to the doctors to the administration understand that the bottom line is quality, lifetime care for kids.”

It is that future commitment to the families and their kids that continues to make Children’s Hospital of Pittsburgh of UPMC a world leader in evolutionary treatments and breakthrough drug therapies.

The Children’s team laid the foundation for a drug that became a game changer for transplantation.   Tacrolimus, also known as Prograf, provides effective immunosuppression without deforming side effects.

“That was — from test tube to triumph — a Pittsburgh story if there ever was one,” Dr. Starzl proudly explains.

Over time, families who thought their kids would never get well are watching as these young patients naturally wean themselves off of their drugs.   A baby, weighing just 10 pounds, might start with a 5 mg dose.  14 years later, now weighing over 100 pounds, this child is on the same 5 mg prescription.  In some cases, the kids are completely off their immunosuppression medication.

“It began to dawn on you that transplantation was not just a palliative undertaking,” Dr. Starzl emphasizes. “It actually was capable of being a cure.”

These discoveries led to one of Children’s Hospital’s most important breakthroughs — chimerism.  The idea is revolutionary.  The new organ is not an island in a hostile sea.  Cells from the donated organ can travel throughout the recipient’s body. The new organ and the recipient begin working together as one.

“100 years from now if you looked at Pittsburgh,” Dr. Starzl explains. “Probably the chimerism discoveries will be viewed as the great advance.”

The experts at Children’s Hospital of Pittsburgh of UPMC explore all treatment possibilities before recommending the best option to improve the quality of life for each patient.

Children’s researchers are investigating novel strategies to optimize outcomes for pediatric transplant recipients.  Our researchers also are exploring new strategies for easing the shortage of donor livers, including investigating hepatocyte transplantation as a less invasive way to provide liver cell tissue to patients when donor tissue is not available, or when patients might not need a full transplant.

While the great surgical feats and scientific discoveries are important, Dr. Mazariegos says it never over shadows their mission.

“It’s about one child at a time, getting a chance to be a kid again.”

The Children’s Hospital family is changing the way medicine is practiced.   Instead of fiddling around with a failing organ to make it last a little longer; Children’s decided to replace the whole engine.  These kids are off and running with a new life.

“George Mazariegos — he’s a great leader and he’s surrounded himself by splendid team members,” Dr. Starzl says it is a real commitment.  It is a partnership.  Children’s Hospital of Pittsburgh embraces every family and every child.

“I get cards all the time about somebody who is celebrating the silver anniversary of what they call their second life.  So, there is something fundamentally grand about all of that.”