Tag Archives: Multi organ

Ariannas gift: Lancaster family’s decision makes groundbreaking organ … – LancasterOnline

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In a Pittsburgh hospital room, 8-year-old Kyree Beachem is up and walking. It’s just a few weeks after a lifesaving multi-organ transplant, an event rare enough even in this age of medical advances to make international news.

It is something for which Kyree and her family had waited for five years.

Nearly 250 miles away, Luis and Evelyn Morales sit in the living room of their Lancaster city home. They watch son Gabriel, 1, take some of his first steps, corralling him before he heads off unsupervised into the kitchen. Daughter Maria, almost 3, gets up from the Mickey Mouse puzzle she’s assembling on the floor and walks over to the brilliantly lit Christmas tree in the corner.

“That’s my sister,” she says, pointing to a homemade angel ornament. The angel’s face is a photo of a grinning, dimpled, brown-haired girl with dancing eyes.

It’s Arianna, the Morales’ first child. A lover of baseball and the movie “Frozen,” bedtime songs and her siblings, Arianna was born with lobar holoprosencephaly, a brain disorder.

“When I was pregnant with her, we didn’t have a good prognosis, ” Evelyn says. “We didn’t have anything ready (when she was born) because she wasn’t expected to make it.”

But Arianna survived. Born at Women & Babies Hospital, she was transferred to Penn State Hershey Children’s Hospital, where she received a shunt, and finally came home 23 days after birth.

She learned to eat by mouth, which meant her feeding tube could be removed. Evelyn and Luis took her to physical and occupational therapy at Schreiber Pediatric Rehab Center. They took her to vision and speech therapy. A student at S. June Smith Center, Arianna eventually could bear some of her weight on her feet. She could use an iPad to communicate.

And less than a week before Thanksgiving, all that changed.

‘They never had an answer’

Arianna, who had just turned 5, woke up lethargic on Nov. 20. A visit to the pediatrician turned into an ambulance ride to Penn State Hershey. Then, Arianna’s breathing became labored. Then, tests showed a lack of oxygen to the brain.

“They still tried to treat her in every way, and tried to figure out what got her sick to begin with,” Evelyn remembers. “But they never had an answer.”

By that Monday, two brain scans showed no activity. And the Moraleses were left with an unimaginable choice: making the call to turn off their daughter’s life support.

They knew that, this time, there really was no hope for Arianna. But when the subject of organ donation was raised, it gave them a small glimmer of peace.

“We understand organ donations a little bit differently,” Evelyn says, because Luis himself may need one someday. He has congestive heart failure, and was preparing in 2013 to be put on the list for a heart transplant before his condition stabilized.

“No parent wants to make the choice of what time to turn off life support,” Evelyn says. When Gift of Life Donor Program, a nonprofit that coordinates organ and tissue donation in this region, stepped in, that burden was lifted from Arianna’s parents.

Arianna’s organs were entered in the Gift of Life database, looking for a match. Ultimately, matches for all of her eligible organs except her lungs would be found, divided between four recipients.

‘I am in tears as I write this’

It was Nov. 24, and Kyree Beachem, of Ellwood City, was already a patient at Children’s Hospital of Pittsburgh of UPMC. She’d been on IV fluids 22 hours a day for all her nutrition, and it was beginning to take a toll on her liver.

Kyree was born with a colon that was missing nerve cells, a condition known as Hirschprung’s disease. She’d had a portion of her small bowel replaced in 2010, only to have that transplant rejected by her body 10 days later.

She was at the top of the list for another transplant attempt, and at lunchtime that day, a call came that organs might be available. The match was confirmed by testing, and at 2 a.m. on the day before Thanksgiving, Kyree was wheeled into the operating room to receive a new liver, small bowel and pancreas.

“I am in tears as I write this,” her mother, Nan Beachem, posted on a Facebook page, Kyree’s Dream Team, that had been set up to support the little girl. “There is a family that has suffered the greatest loss a parent can experience, and in the midst of that loss is giving my daughter a chance to live and fulfill her dreams.”

All Kyree’s mother knew was the name of the hospital where the donor had been.

Triple organ transplants are still rare — rare enough that Nan Beachem was contacted by CNN for a story before Kyree was even out of surgery.

The resulting CNN.com story about Kyree’s surgery was spotted by one of Evelyn Morales’ relatives.

And the relative started to investigate whether the Morales family’s decision to donate Arianna’s organs could be linked to Kyree’s miracle on the other side of the state.

The timing was right. The girls’ ages were compatible. There were details on the Kyree’s Dream Team Facebook page, that just … matched. Perfectly.

And so it developed that, by the Monday after Thanksgiving, less than a week after organ-transplant surgery, Nan Beachem and Luis and Evelyn Morales had found each other.

‘I just melt into tears’

The families of organ donors and recipients usually aren’t known to each other unless special effort is made, according to the Gift of Life website. Strict patient privacy is observed, and a family support services department reviews all correspondence between donor families and recipients.

But social media allowed Nan Beachem and the Moraleses to bypass that — though, Evelyn says, she and Luis still will write letters via Gift of Life to the three other recipients who received Arianna’s heart and kidneys.

And social media allowed the Moraleses to set up a visit with Kyree.

On Dec. 16, Luis and Evelyn stepped into a room on the transplant floor of Children’s Hospital of Pittsburgh. In the bed was a small, blond girl in a panda bear-patterned hospital gown, her hair pulled to the side in a red and green bow.

“They were bearing bags and bags of gifts, ornaments from family and friends; it was amazing,” Nan Beachem said in a phone call last week.

“We just wanted them to know we’re here to support them now, too,” Evelyn said.

And the families exchanged Christmas ornaments: Arianna’s cousins made two sets of angel ornaments bearing the girls’ faces — one for Kyree’s hospital room tree, another set for the Moraleses. Arianna’s preschool classmates sent ornaments, and a friend of the Morales family made a little, blond angel ornament bearing the words “Arianna” and “Kyree’s Angel.”

“The past few weeks have been a lot of everything,” Nan Beachem says, “Christmas, the transplant, how Kyree is feeling hour to hour.” There really have been only a few moments to sit and reflect, she says, “and when I do, I just melt into tears.”

Nan Beachem knows firsthand, she says, some of the Morales’ loss.

In 2006, her own 7-year-old daughter, Tessa, passed away from MPS, a genetic enzyme-related disease.

‘There’s hope in any of it’

The Moraleses are just at the beginning of their journey after Arianna’s death. After staying home to care for her oldest daughter, Evelyn starts work in January at a pediatric home health care company. After Christmas break, Luis, who is on disability because of his heart condition, heads back for his second semester at Harrisburg Area Community College. He’s pursuing a degree in social work — inspired, he says, by Arianna.

Throughout their daughter’s five years, Luis and Evelyn say, they’ve been surrounded by inspirational teachers and therapists. “Now that we’ve learned so much with Arianna,” Evelyn says, “it would be a shame not to use that. And there’s so much need for it.”

And, she says, “there’s hope in any of it, you know? Whether in utero, or several years, or a whole lifetime, they can make a huge difference in the world. And Arianna certainly did that.

“I mean, she brought a whole community together, she changed the direction of our lives, and now she’s saved more lives through organ donation.”

Girl who survived record transplant doing well – WCSH-TV

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HOLLIS, Maine — (NEWS CENTER) Just over four years ago, a 13-year old girl from Hollis received a ground breaking multi-organ transplant.

Alannah Shevenell received a new esophagus, liver, stomach, spleen, pancreas and small intestine after losing her own organs to a rare tumor.

And her body has not rejected any of the organs — which is one of the biggest concerns following a transplant operation
Doctors say her progress is nothing short of a miracle and because she is doing so well her family is now planning for her future.

Alannah and her grandparents, who legally adopted her are celebrating their fourth Christmas at home since her ground breaking surgery. She received the first known esophageal transplant in the world.
It was also the largest number of organs transplanted at one time in New England.
The 7th grader has since weaned off the dozens of medications but she will have to take several anti-rejection drugs for the rest of her life. She has to return to Boston several times a year for blood tests and scans.

The cancer has not returned and her body has accepted her organs without any serious problems.
Her grandparents say for the first time in years they are now able to think about Alannah’s high school and college plans and other important milestones.

‘Looking at two years from now where are we going to be thinking about buying another car because she will be old enough to drive,’ said Debi Skolas, Alannah’s Grandmother..

Because her medical problems, Alannah missed several years of school.

She has caught up academically and serves on the student council and sings in the choir at St. James School in Biddeford.

Read or Share this story: http://on.wcsh6.com/1YEHR6d

8-year-old quadruple transplant recipient meets donor’s parents – My Fox Boston

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Updated:

PITTSBURGH —

An 8-year-old girl from Ellwood City, Pennsylvania, who underwent a rare quadruple-organ transplant last month met the parents of the organ donor.

According to the Kyree’s Dream Team Facebook page, Luis Morales and Evelyn Morales visited Kyree Beachem at Children’s Hospital of Pittsburgh Wednesday.

Kyree received liver, pancreas and small and large intestines from the couple’s daughter, Arianna Morales.

“I never wanted a family to lose their child so that mine could live. The Morales family wanted to see another child live if their angel was given her wings,” Kyree’s mother, Nan Beachem, posted on Facebook.

Kyree was moved out of the pediatric intensive care unit and onto the transplant floor, where she slept Wednesday night without oxygen for the first time since the surgery.

12-year-old finds her tune after multi-organ transplant – CBS News

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PITTSBURGH — Chelsea Wheeler had a multi-organ transplant in September at Children’s Hospital Pittsburgh — but she isn’t missing a beat.

The 12-year-old is learning to play the ukulele, with the help of her music therapists Kory Antonacci and Nicole Steele, reports CBS Pittsburgh.

“Christmas, favorite time of the year. Christmas, lots of holiday cheer,” Chelsea sings to a song she wrote herself.

littlegirl.jpg

Chelsea plays the ukulele with her music therapists.
CBS Pittsburgh

“Somebody had told me she would probably enjoy music therapy,” Antonacci said. “And when I walked in the door, it was kind of an instant click.”

“She came in and said, ‘What do you want to do?'” Chelsea said. “And I said, ‘Learn to play the ukulele.’ So, she got me a ukulele, and we started playing together.”

Chelsea’s mother, Linda Wheeler, told CBS Pittsburgh that the Connecticut family researched hospitals nationwide — and a reputation for transplant success brought them to Pittsburgh.

“We’ve been here through Halloween, through Thanksgiving, we’ll be here for Christmas,” she said. “And it’s like another family.”

“Everyone’s really nice here,” said Chelsea. “All the nurses are really nice, They’re all my friends up on the floor. They make it better.”

And the song she wrote?

“I love Christmas, so I wrote down all the things I love about Christmas, and it kind of just came,” she said.

Chelsea expects to sing of many Christmases to come, thanks to her musical friends, and Children’s Hospital.

Pineville girl looking for transplant pushes state for insurance answers – KALB News (press release)

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More Video…

A local 9-year-old is in the fight for her life after her family claims a change in insurance halted her possibility of a transplant.

Source: KALB

PINEVILLE, La. (KALB) – A local 9-year-old is in the fight for her life after her family claims a change in insurance halted her possibility of a transplant.

As News Channel 5’s Emileigh Forrester (Twitter: @EmileighKALB) reports, the girl’s mother is doing everything she can to get that changed, and it appears health officials are listening.

Nine-year-old Kylie Bush wants to be normal.

“I want to be able to do the things that other people can do,” she said.

Her mom, Joan Walleser, said Kylie was dropped from a contract with the state for an organ transplant in November.

“She has what they call short gut syndrome,” said Walleser. “Now, she’s kept alive by an IV and the stuff that keeps her alive, it does cause ongoing liver damage.”

The girl needs a new liver, pancreas and small bowel.

But, Kylie’s third level of insurance recently changed from Legacy Medicaid to Bayou Health. The family said that’s something they weren’t aware of. They said the change made null and void that contract for the transplant.

“I was concerned at first,” Walleser said. “But, I had confidence that they would fix it but then they were kind of saying no, she’s not going to get back on Legacy Medicaid.”

Walleser said she has been in contact with the Department of Health and Hospitals, who is trying to figure out what went wrong. Walleser said she’s not concerned with the basic services.

“With the transplant, the actual transplant and the contract, it is a multi-million dollar procedure,” said Kylie’s mother.

However, the state is contesting that assertion as well as information in a post on the website “change.org” that was started by a family friend. In a statement, Amelia Burns with DHH told News Channel 5 that Kylie is still on the list to get that expensive procedure. They believe there is just confusion over how to access the benefit.

“No individual has lost coverage or access to care as a result of the ongoing transition of services from fee-for-service Medicaid into managed care, and the move to managed care would not have caused the transplantation contract issue described in the post,” Burns wrote in the statement.

Burns said DHH secretary Kathy Kliebert called the family Monday and officials followed up Tuesday to discuss her concerns. They say the proper steps are being taken to ensure Kylie receives the care she needs.

As a single mother, Walleser works around the clock to provide for Kylie and her siblings.

While officials are now working with her to resolve the issue, Walleser said the stress of the entire ordeal has made everything a lot more difficult.

“If she does not get the transplant, however long her little body can survive on TPN and then it’s just nature takes over and her survival will not be, not be that good,” said Walleser.

Kylie’s mother also started a GoFundMe page that has raised nearly $10,000 to cover expenses.

Below is a copy of the statement sent by Amelia Burns to News Channel 5:

While privacy and patient protection laws prohibit us from disclosing specifics from the Change.org petition, we have investigated these claims thoroughly and found the post to be wildly inaccurate. No individual has lost coverage or access to care as a result of the ongoing transition of services from fee-for-service Medicaid into managed care, and the move to managed care would not have caused the transplantation contract issue described in the post.
As the Department evaluates the operation of the Medicaid program and strategies that have been successful around the nation, it incorporates these practices into its Medicaid state plan. When, as here, the best practice involves moving groups of individuals into managed care, the Department spends significant resources preparing providers and the population for the transition. Despite these efforts, we can never do enough outreach and education to reach everyone before the transition.

This case is an example of someone who did not receive the outreach she needed to be comfortable that her child’s services were still available. Secretary Kliebert called her personally on Monday and DHH officials followed up yesterday to discuss her concerns. We now have both her Bayou Health plan and Medicaid officials working with her to work through the steps she needs to take to ensure her child receives proper care. There was no change in the benefit offered, just confusion over how to access that benefit, and we are working directly with the family on that issue.

Finally, to the statement alleged to have been made by a Department employee, we are investigating the matter and will take appropriate action. We do not in any way condone or support a statement like the one alleged in the petition.

Boy in need of life-saving multi-organ transplant gets visit from Santa | Fox News

Published December 18, 2014FoxNews.com

A 13-year-old Georgia boy too sick to visit Santa got a special visit at his home Wednesday from the man himself.

Dalton Robinson, who was diagnosed with short bowel syndrome (SBS) when he was just 2 years old, needs a life-saving five-organ transplant. His family told MyFoxAtlanta.com that with each day that passes, his condition worsens.

But on Wednesday, Dalton was able to talk about his wish for a Playstation 4 with Santa himself.

“Today was a very special day … Dalton is too sick to go and see Santa. But when Santa heard this, he knew he needed to make a special trip. He spent a lot of time with Dalton, and they talked about Christmas cookies, the North Pole and video games,” a post on the family’s Hope for Dalton Facebook page read.

“Santa also gave Granny the biggest hug and reminded her of what a special person she is too,” the post read.

Dalton’s mother passed away in 2009, and his grandmother Zandra Williford, along with her husband, Alan, have been caring for him full time.

After numerous treatments, Dalton was placed on the national organ transplant waiting list in March 2014, and doctors consider his condition extremely serious, according to his profile on Children’s Organ Transplant Association.

While Dalton’s wish for a PlayStation 4 will be granted, the family is also wishing for a miracle this holiday season.

via Boy in need of life-saving multi-organ transplant gets visit from Santa | Fox News.