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DURHAM, N.C. — “Bertha” and “Bobby” no longer have to be tethered to Samantha Riggs' side, after she pulled through transplant surgery with a brand new heart at Duke University Hospital.
Riggs and family had nicknamed the ever-present and cumbersome medical monitoring equipment that were Samantha’s constant companions for months. They joked that it was high time Bertha and Bobby went off on their own.
Everything was normal for Samantha until December 2012, when the happy, bright and seemingly healthy 9-year-old girl from Cana started having trouble breathing while playing basketball at St. Paul School.
“A trip to the local ER led to the discovery that Samantha has a very serious medical condition called myocarditis,” according to Kathy Joyce, Samantha’s grandmother, in information posted to caringbridge.com.
“She was quickly transferred and admitted to one of the best children’s health facilities in the southeast.”
Following a stop at Brenners Children’s Hospital, Samantha was airlifted to Duke Children’s Hospital Pediatric Cardiac Intensive Care Unit. Only a day later she went into the operating room.
“Day two at Duke, she underwent open-heart surgery to install/attach a Berlin Heart pump,” Joyce said. “The surgery was long but successful. She will remain at Duke as long as the Berlin Heart is on.”
The Berlin heart took over pumping blood, because Samantha’s swollen heart could no longer do the job. Duke staff described the use of the machine as a bridge until a transplant could take place.
The machine weighed about 300 pounds and couldn’t be more than a few feet away from Samantha, according to Duke staff.
The device, which the child named “Bertha,” allowed Samantha’s blood to flow through plastic tubes into a bulb outside her body and then back to her heart.
Doctors could watch for clots forming inside the clear bulb shape. If so, they could replace the Berlin heart at bedside.
“During the last 12 days the Berlin Heart has had to be replaced twice,” Joyce said. “This is done at Sam’s bedside, and thankfully, is not nearly as severe as surgery.”
“Bobby” was the companion monitor that Samantha was also hooked up to.
Family members documented these events leading up to Christmas Day 2012 and Samantha’s 10th birthday on Dec. 26.
While waiting for a heart, to pass the time, Samantha decided that Bertha and Bobby, constantly together anyway, should have a wedding. Many members of the Duke staff participated and they documented the event on video, which can be viewed HERE.
Finding a heart for the little girl that Joyce dubbed “Warrior Princess” would not be accomplished for more than four months.
A teacher from Durham’s school system came to the hospital for one-on-one classes five days a week and participated in Easter egg hunts when not studying.
Four children remained in the ward waiting for new hearts. Joyce held out hope on Day 123.
“Most of our time is spent waiting these days,” she said. “It has been a long journey so far. We look to get home in the summer hopefully and have a long awaited community party.”
On Day 131, the family’s patience finally paid off. A heart had been found.
The report after the long surgery brought much positive news and Samantha continued to act like a warrior, Joyce said.
“While having her first few sips of Blue Gatorade, she asked to have the head of her bed raised,” Joyce said. “Once that was accomplished, she asked, ‘Do I have to stay in the bed?’
“She knows that getting up and moving around as soon as possible is an important step in going home. She has acknowledged that it will not be easy and she will have pain, but she is determined to do whatever it takes to get back to Farm Brook.”
And on Day 133: “Day 2 with the new heart and no Bertha! The breathing tube is out,” Joyce reported. “Things remain steady. Our Warrior Princess is doing well. The doctors are pleased and Sam’s new heart is working well.”
Family members joked that it was past time for Bertha and Bobby to get away on their honeymoon, Joyce said.
“We as a family wish the happy couple the very best,” Samantha’s grandmother said. “We are grateful beyond words for the work Bertha performed flawlessly, albeit noisily, to sustain Samantha’s Life until the donor heart was obtained.”
The family felt happy after the sudden positive developments starting Tuesday, Joyce said when contacted by The Gazette. They know life won’t be exactly the same as before, but expect Samantha to be happy and healthy.
One change involves having to take anti-rejection drugs for the rest of her life, which is normal for transplant surgeries. Samantha will have a regimen of medications, procedures and tests even after she gets out of the hospital.
“We’re elated,” Joyce said. “We have a very optimistic outlook for the future.”
It may be a matter of months before doctors release Samantha from the hospital.
About the donated heart, family members have no idea who it came from. Joyce said she gets that question a lot.
The family has been told that if they want to find out about the donor, they need to write an anonymous letter to the organ transplant organization, which will be passed on to the donor’s family. If that family is interested in knowing, they will let the organization know and a personal visit can be arranged.
In a time of grief, the donors made the decision to give the gift of life.
“It’s bittersweet to stop back and think about what they’re going through, the family who donated this gift to us,” Joyce said. “We can only hope and pray they receive some peace from it.”
The family has been overwhelmed by the prayers and the support by the people from the region. This experience has confirmed that this is a great place to live.
“The entire area has just blown us away,” she said.
And the 300-pound machine that Samantha was attached to for months?
“Bertha’s hanging out in the hallway, waiting for her good-bye party,” Joyce said.