Transplant Families Resource Fair in Phoenix
Phoenix, AZ––Transplant families will be hosting a community resource fair, April 4th.
This free event will be held 5:30 to 7:30 pm that Tuesday. The resource fair is intended to inform transplant families and the public of the many services available to them throughout the community. It will be located at Phoenix Children’s hospital with assistance from the Amanda Hope Rainbow Angels.
The event will feature booths and displays representing various community resources and programs that can provide assistance, advice and support. Families will be awarded several different raffles by our generous booth partners.
Transplant families wants to give families every resource available and a chance to connect with other families living this very unique life. We want the chance to celebrate each other and the tremendous gift of life that our kids have been afforded.
To attend the event, you must be an Arizona transplant family. For more information on attendance please RSVP via email@example.com or if you are a HopeKids member via their website. If you are interested in providing information to transplant families at this event or would like to hold an event like this in your area, please contact Melissa McQueen at firstname.lastname@example.org.
PHILADELPHIA– Approximately 30,000 organ transplants occur in the United States each year. However, between 20 and 50 percent–depending on the organ type–of the transplanted organs fail within five years, most often because the recipient’s immune system attacks, or “rejects,” the donated organ. Researchers at the Perelman School of Medicine at the University of Pennsylvania have discovered a method that appears to provide earlier warning of organ transplant rejection compared to standard methods, and requires only a blood test rather than a more invasive and painful needle biopsy. This new method is detailed in a study published today online in the Journal of Clinical Investigation.
If the validity of the new approach for detecting transplant rejection is confirmed in further studies, it could enable doctors to keep transplant recipients healthier and their transplants working longer. A better biomarker would allow doctors to reverse rejection episodes in many of these cases using immunosuppressive drugs.
“There is a critical need for a biomarker that will work across the entire field of transplantation and will allow us to detect rejection and intervene much sooner than we are currently able to,” said lead author Prashanth Vallabhajosyula, MD, an assistant professor of Cardiovascular Surgery. “We think our proposed biomarker platform could fulfill that need.”
In principle, when doctors are able to detect rejection episodes earlier and intervene more effectively, transplant recipients also will be able to use lower maintenance doses of immunosuppressive drugs when rejection is not occurring. That will help them avoid the long-term side effects of these drugs which include cancers, high blood pressure, opportunistic infections, and kidney damage.
The new method involves tiny, capsule-like structures known as exosomes, which normally are secreted from most types of cell. Precisely what exosomes evolved to do isn’t clear, but scientists know that these capsules contain proteins and other molecules from their mother cell that can influence the activities of neighboring cells. Like their mother cells, exosomes have protein markers on their surfaces — often called MHC antigens — that identify them to the immune system as part of the body. Just as donor and host cells usually differ in their MHC markers, so do donor and host exosomes. In this study, the researchers reasoned that donor exosomes’ distinct surface markings would allow these tiny structures to be detected in blood tests and potentially used to predict transplant rejection episodes.
Using a standard laboratory model in which human pancreatic islet cells–key producers of insulin–are transplanted into mice, researchers showed that they could indeed detect and quantify the exosomes from the donated human cells in the blood of the mice. Moreover, when the researchers induced an immune rejection of the transplants in the mice, the detected levels of transplanted-islet exosomes dropped sharply and almost immediately. “The levels of those exosomes in the bloodstream changed dramatically, well before we saw changes in other current clinical markers such as fasting glucose levels,” Vallabhajosyula said.
He added that the reason for the sudden drop isn’t clear–since it happened before there was evident damage to the transplanted islet cells–but probably in part involved a reduced production of the exosomes by the cells.
In an initial exploration of the transplant-exosome strategy in people, the researchers examined stored blood plasma samples from five recipients of transplanted islet cells in an NIH clinical trial, and were able to detect donor exosomes in these samples following the transplants. They also found some preliminary evidence that their falling-exosome measure could be useful in predicting transplant rejection in people. For one patient who experienced a rejection of the transplanted islet cells, a steep drop in the level of donor exosomes was detectable in a blood sample taken six and a half months before the transplanted cells stopped working and the patient developed clinical signs of diabetes.
In further experiments using the human-to-mouse transplant model, the team were able to analyze the contents of donor exosomes in the blood of recipient mice. They found that these islet cell exosomes carried dozens of distinct molecules including insulin and other endocrine hormones — and that the composition of this “cargo” changed during transplant rejection, causing sharp increases, for example, in the levels of several dozen molecules normally found in the exosomes.
Researchers suspect that taking these changes into account could enhance the reliability of a transplant rejection early-warning test, but may be even more helpful in identifying the specific type of injury sustained by the transplant–discriminating, for example, an injury due to transplant rejection from a less worrisome injury due to infection.
“I believe that analyses of exosomes from transplanted organs will ultimately provide a very powerful and unprecedented ability to understand the conditional state of the organ as a whole,” said study senior author Ali Naji, MD, PhD, the J. William White Professor of Surgery.
In a quick test of the breadth of their approach, the researchers showed that they could isolate and detect donor-tissue exosomes in a different type of transplant: kidney transplant, currently the most common type of organ transplant. In this case, the team found that they could isolate and quantify donor-kidney exosomes not just in blood but also in urine, thus potentially enabling urine tests which are even less invasive than blood tests.
The team are now following up with further studies, including studies of their method with different types of transplantation, and studies of specific cargoes of transplant exosomes.
Vallabhajosyula added that, in addition to the potential of the transplant-exosome approach as a diagnostic tool, it may be useful generally in furthering the scientific understanding of transplant biology.
“The ability to isolate and analyze tissue-specific exosomes opens a window to understanding their roles in transplant rejection and transplant tolerance,” he said.
Additional Penn authors on the study include Laxminarayana Korutla, Andreas Habertheuer, Ming Yu, Susan Rostami, Chao-Xing Yuan, Sanjana Reddy, Chengyang Liu, Varun Korutla, Brigitte Koeberlein, Jennifer Trofe-Clark, and Michael R. Rickels. Funding was provided by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Disease (R21 AI11010-01 ) (U01 DK070430) and the NIH National Institute of Diabetes and Digestive and Kidney Diseases/City of Hope Integrated Islet Distribu¬tion Program (UL1 TR000003)(P30 DK19525).
Penn Medicine is one of the world’s leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation’s first medical school) and the University of Pennsylvania Health System, which together form a $5.3 billion enterprise.
The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 18 years, according to U.S. News & World Report‘s survey of research-oriented medical schools. The School is consistently among the nation’s top recipients of funding from the National Institutes of Health, with $373 million awarded in the 2015 fiscal year.
The University of Pennsylvania Health System’s patient care facilities include: The Hospital of the University of Pennsylvania and Penn Presbyterian Medical Center — which are recognized as one of the nation’s top “Honor Roll” hospitals by U.S. News & World Report — Chester County Hospital; Lancaster General Health; Penn Wissahickon Hospice; and Pennsylvania Hospital — the nation’s first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.
Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2015, Penn Medicine provided $253.3 million to benefit our community.
GENESEO — Trevor Schefsky’s battle of a rare genetic condition began at birth. Now a sophomore at Geneseo High School, that battle likely will make him miss the start of his high school junior year.
Mr. Schefsky, along with his parents, Tony and Lori Schefsky, and hsi brother, Zach, are at the Children’s Hospital in Cincinnati, Ohio, where he is scheduled to receive a bone marrow transplant later this month.
Before that happens, he will undergo chemotherapy to destroy the damaged cells in his bone marrow. Mrs. Schefsky said the process takes four to six months, keeping her son hospitalized until at least July.
His condition, DADA2, is a recessive genetic condition that causes mutations in the CECR1 gene preventing it from correctly encoding the enzyme Adenosine Deaminase 2 (ADA2) that stabilizes the lining of blood vessels.
“Without it, the body attacks its own healthy cells, which, in turn, leads to inflammation, immune deficiency, organ damage and the destruction of bone marrow,” Mrs. Schefsky said.
There is no enzyme replacement therapy available for ADA2 deficiency. Because little is known about the disease, there are relatively few treatments, Mrs. Schefsky said.
Trevor’s journey began shortly after his birth. Until he was 5 years old, his mother said, he suffered from rashes, hives, swollen eyes, high fevers, asthma, pneumonia, joint pain, mouth sores, allergic reactions to antibiotics and his legs “giving out.” She said it is believed he was in remission between the ages of 5 and 12.
“When Trevor was in seventh grade, he had a swollen lymph node in his neck, so we went to our family doctor,” she said. “They did blood work and Trevor’s white blood cells and absolute neutrophils were alarmingly low. We were put in the hands of St. Jude in Peoria.”
Because of his blood levels, he couldn’t attend school and be in public places. He went though many tests in search of a diagnosis; although doctors determined his illness was related to his immune system, no single cause of his illness was found.
He was referred to an immunologist at the Children’s Hospital in Cincinnati, Ohio, where they also did many tests — but reached no diagnosis.
“However, they were treating the low levels he had with infusions,” Mrs. Schefsky said. “As the infusions and medications have never helped with his numbers coming up, they have prevented him from illnesses.”
Trevor could return to school as an eighth-grader, but was not allowed to play soccer, his favorite sport. He also couldn’t snow ski, play basketball or participate in any contact sports because of an enlarged spleen.
“That was a very hard year for Trevor,” Mrs. Schefsky said. “He lived his life with monthly infusions and daily medications and weekly blood work that showed to always be low. He was hospitalized in Peoria anytime he would run a fever of 99.6 or above.
“Our lives went on hold in the blink of an eye,” she said. “We lived our lives as normal as possible. Trevor was rarely sick and he didn’t like his life being on hold.
“We were able to get soccer approved with a spleen guard,” she said. “He was feeling like life was semi-normal.”
Trevor was selected for a research study at the Children’s Hospital in Cincinnati. About a year later, the family received a phone call with a diagnosis: DADA2.
“No one seems to know very much, but more is being learned every day,” Mrs. Schefsky said.
In November 2016, the family went to Washington, D.C., for the first-ever conference on the disease. They were able to meet families going through the same thing as they were, and the doctors working on a cure.
Mrs. Schefsky said Trevor has reached a point where medications and infusions are not raising his levels.
“His bone marrow is at 40 percent, so we cannot wait any longer,” she said. “It is time for a bone marrow transplant, which will hopefully be a cure for Trevor.
“In all of this — with other hardships and losses — our faith has kept us going and I have always felt God is with us,” she said. “I do not believe God gives us these hard times in our life, but I do completely believe that God is with us in these hard times. He is there in our doctors and, with as rare as a condition that Trevor has, it is a complete miracle that we have a diagnosis at all.
“God is good all the time,” she said. “All the time, God is good.”
Mrs. Schefsky hopes their story encourages others to learn more about DADA2 by visiting dada.org. “TrevStrong” T-shirts also are being sold to support Trevor’s journey.
The T-shirts include scripture from Joshua 1:19 on the back: “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Shirts may be ordered at email@example.com. Contributions to TrevStrong may be mailed to Central Bank, 101 N. State St., Geneseo, IL 61254, made out to TrevStrong with “Schefsky” in the check memo line.
In 2014, the last year of my bachelors, I was diagnosed with Myelodysplastic Syndrome, a blood transfusion dependent rare disease causing the red blood cells production to cease. I didn’t know at that time what I would have to go through. I got blood transfusions, tried different medicines but there was no improvement. The only option I was left with was a bone marrow transplant (an expensive procedure with a lot of complications involving high doses of chemotherapy and transplantation of matched bone marrow)
I remained dependent on blood transfusions (2 bags/month) for one and a half years and was then admitted to Armed Forces Bone Marrow Transplant Centre (Combined Military Hospital) Rawalpindi, Pakistan for bone marrow transplant as my elder brother’s bone marrow matched mine. I received a high dose of chemo for 10 days and then bone marrow was transfused through the vein.
I lost my hair and my skin went dark. I came smiling but my smile had gone. I couldn’t eat and vomited whenever I tried to eat. I lost a lot of weight. Those 28 days in a small four walled room were the worst days of my life. I was finally discharged with a lot of medications and finally got to meet my parents. I had to wear a face mask and had to take care as my immunity was zero. I was prone to infections. I had to go for check-ups twice a week. I saw patients who couldn’t get a transplant as they couldn’t find a matched marrow. I saw patients lose their lives in the procedure. I saw patients whose transplant didn’t work and their condition got worse.
I received another chemotherapy as I was still transfusion dependent and they said my bone marrow was going into post-transplant pure red cell aplasia. After some days I got hemorrhagic cystitis as a side effect. There was blood in my urine and I had to go to the restroom every five minutes. Along with that, I got Cytomegalovirus Infection. I was readmitted for 20 more days. More than 30 cannulas pierced my veins. I saw salts and medications dripping through my veins all day long. I was discharged as I got better. I had lost 10 kg of my weight by that time. I used to think why I had accepted this treatment and why I was chosen for this. After some days my blood counts became better and I was no longer dependent on transfusions. With time my counts kept improving. I got my immunizations after 15 months. I also got another complication called Herpes Zoster infection. I got medications for that and I recovered from that too. Now it has been 21 months since the transplant and I have got a job in my field of Medical Laboratory Technology.
During my illness, I lost my father. His prayers kept me alive and strong and made me fight this monstrous disease.
I was lucky to have Major General Tariq Mehmood Satti as my doctor, who was very kind-hearted and caring. With time I saw many of my close friends distance themselves from me. I guess smoking was the only thing that kept us together and I gave it up before my transplant.
What I learned is that if God wants He can save you from so many complications and if He doesn’t, you can’t live for a single second.
The purpose for writing all this is solely to help those who are going through tough times in their lives and not to brag about my sufferings. Just believe in God and remember that He is the only one who can get you out of your tough times.
For the past 10 months, little Nora and Ava Dolan have been unable to properly hug or play with their baby brother.
Born 12 weeks early with two serious heart conditions, the sisters’ beloved sibling, Henry, was unable to leave hospital.
Hooked up to tubes and wires, the youngster battled through infections, adverse drug reactions and a series of operations.
But now, he has gone home for the first time in his life – five months after undergoing a life-saving heart transplant.
Henry was pictured leaving St Louis Children’s Hospital in Missouri, US, on Tuesday with his delighted parents, Mollie and Sam.
Nora, two, and Ava Dolan, five, play with their baby brother, Henry, at home(Photo: Mollie and Sam Dolan)
The adorable youngster wears a “This Warrior Is Going Home” baby grow(Photo: Mollie and Sam Dolan)
Henry was born 12 weeks early last May with two serious heart conditions(Photo: Mollie and Sam Dolan)
Dressed in a “This Warrior Is Going Home” baby grow, he was pushed out of the facility in a pram, decorated with two bright balloons.
His parents later said they would “never forget” the special day.
And they were not the only ones excited to have Henry home.
Nora and Ava were pictured playing on their living room floor with their baby brother, gently touching his hands and stomach.
The girls, aged two and five, had spent the past 10 months FaceTiming their sibling from their home in Annandale, Minnesota.
Because St Louis Children’s Hospital is situated 600 miles away from the house, it had been difficult for the pair to visit Henry.
With her brother in hospital, Nora took to carrying a specially-made doll version of him everywhere(Photo: Mollie and Sam Dolan)
Henry’s mum, Mollie, said she will “never forget” the day she brought her son home from hospital(Photo: Mollie and Sam Dolan)
But now, they can see him in person every day.
They can also give him a proper hug.
While her little brother was in hospital, Nora had taken to carrying a specially-made doll version of him everywhere she went.
She would often stop to cuddle, kiss or speak to her ‘baby Henry’, ignoring the tubes, bandages and scars on the doll’s body.
Like the real-life Henry, the toy has tubes attached to its nose and mouth, a wire fixed to its chest, and even a scar over its heart.
Mum Mollie previously told Mirror Online the doll was created by the talented friend of another parent whose child has heart problems.
Henry’s mum, dad Sam and two older sisters pose beside a banner reading: “Hope for Henry”(Photo: Mollie and Sam Dolan)
Mollie and Sam live-blogged their baby son’s life-saving heart transplant last October(Photo: Mollie and Sam Dolan)
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She added that it helped her daughters to deal with their brother’s absence.
Mollie, who live-blogged her baby son’s life-saving heart transplant last October, said: “My daughters love the doll, especially our youngest daughter Nora.
“She walks around the house calling it her ‘baby Henry’. When she can’t find it, she says, ‘Where’d my baby Henry go?’ It’s so cute.
“As far as coping goes, she doesn’t fully understand things yet, but she knows baby Henry is sick and that he’s in the hospital getting better.”
She added that Nora carried the doll “everywhere” and really looked forward to the day when she can properly hug her baby brother for the first time.
Mollie, who remained at Henry’s bedside during his time in hospital, told Mirror Online: “Because we are so many miles apart, we FaceTime every day.
Little Henry beams from his hospital bed shortly before being allowed home(Photo: Mollie and Sam Dolan)
Nora’s doll has tubes attached to its nose and mouth, a wire fixed to its chest, and even a scar over its heart(Photo: Mollie and Sam Dolan)
“The first thing she says to me on the phone is, ‘You at the hospital with baby Henry mom, can I see him? I be quiet, mom.’ It’s the cutest thing ever.
“We all just cannot wait to be together under one roof. The girls have so much love to give to their little brother when he gets home.”
This week, the mum-of-three posted a photo on Facebook of her and her husband taking their son home from hospital for the first time.
She wrote: “March 14th, 2017. A day we will never forget. After 10 months, 316 days, 7,584 hours, 455,040 minutes AND 27,302,400 seconds.”
She later posted a video of Ava making her baby brother giggle.
She captioned the footage: “Well we survived our first night! And Henry’s definitely not lacking any attention around here.”
Mollie is pictured celebrating Halloween with Henry last year as he ‘fought withdrawals’(Photo: Mollie and Sam Dolan)
Sam tenderly places his hand on the infant’s head at St Louis Children’s Hospital in Missouri, US(Photo: Mollie and Sam Dolan)
Little Henry had spent his entire life in hospital after being born 12 weeks early, weighing just 2lbs, 11oz, on May 2 last year.
He was later diagnosed with two serious heart conditions, resulting in him needing an organ transplant to save his life.
His devoted family faced an anxious wait for a new heart, while he slowly built up his size and strength in intensive care.
Finally, five months after his birth, his parents received the news they were hoping for – there was a heart ready for him.
Last August, Henry was transferred to the Missouri-based hospital from a facility in Minnesota ahead of his transplant.
Taking to Facebook on October 15, Mollie and Sam said they were speechless after being told their baby would soon be undergoing a transplant.
Henry had spent his entire life in hospital after being born 12 weeks early, weighing just 2lbs, 11oz, on May 2(Photo: Facebook)
Surgeons prepare to work on the baby’s body as he undergoes the transplant(Photo: Facebook)
They added: “Please be praying for us and the donor family as we know they are going through unimaginable grief.”
The following morning, Henry was wheeled into surgery, covered in tubes, after being given ‘major snuggles’ by his emotional mum.
Mollie begged her friends to ‘pray’ for the tot, while warning them that she would be posting graphic images of his surgery.
Writing on the Facebook page, Hope for Henry, she said: “Just a pre-warning, I do intend to post pictures and videos from surgery throughout the day. So if you have a weak stomach, you may want to avoid his posts for the remainder of the day.”
She then proceeded to provide incredible updates on Henry and his progress as he was fitted with the new heart by a team of surgeons.
The updates – featuring pictures and information – were sent to Mollie and Sam by doctors inside the operating room via the texting application, EASE.
Mollie begged her friends to ‘pray’ for the tot ahead of his major operation(Photo: Mollie and Sam Dolan)
They included images of the baby’s old and new hearts, his medical team and a bypass machine used to keep blood pumping around his body.
Brilliantly, the surgery was a success, with the final update showing a moving video of Henry’s ‘perfect’ heartbeat following the transplant.
However, the little boy later had to “fight withdrawals”. He also faced further surgery and, at one point, contracted pneumonia.
Despite this, he has now been able to go home with his family – although he still has tubes in his nose and needs supplied oxygen.
A ‘Meal Train’ appeal has been launched for the Dolans so they have “one less thing to worry about” following Henry’s discharge from hospital.
When Logan was admitted, the family didn’t know how long it would have to wait for a heart to become available. Doctors gave an estimated wait time of six weeks to seven months, said Logan’s mother, Trish Vallee.
“We just [had] to hope and pray for the perfect match,” she said. “It’s kind of heart-wrenching, too, knowing that someone else’s loved one has to die for ours to survive.”
Logan was born with hypoplastic left heart syndrome, a birth defect that affects blood flow. The teenager has had eight open-heart surgeries, 11 strokes and two seizures from epilepsy during the course of his life, his mother said.
Family members knew the surgery was going to be necessary down the road, but they were hoping it could wait until he was a little older.
Community support for Logan – who his mother described as caring, sweet and unbelievably strong – has been overwhelming, Trish Vallee said.
“I am blessed with an amazing group of girlfriends, and they started making T-shirts that say #TeamLogan,” she said. “The website was up for two days and sold 300 shirts. … School support has been phenomenal. We are very blessed.”
Logan likely will be in the hospital for another two to three weeks before going to the Ronald McDonald House for follow-up care to make sure his body doesn’t reject the new heart, family friend Stacy Scow said.
“The best-case scenario is for him to be home in six to eight weeks, but it kind of depends on how he does there,” Scow said. “And after that, he still has to go down to the hospital a few times a week for infusions to help with chances against rejections.”
Scow said that Team Logan is working on organizing fundraising events for the Vallee family. At a recent Marengo High School basketball game, students wore red in support of their classmate.
“It makes me cry just thinking of it,” Scow said. “The support has been overwhelming.”
CHARLOTTE, NC (WBTV) –In the darkest of moments some find light shining under the steeple. Faith was all Melanie and Mike Leitner could cling to after hearing their precious baby girl may not live to see her first birthday.
“We were told that Ella had a large mass in the left ventricle of her heart and to prepare ourselves that she would not make it through the weekend,” Melanie said.
Dr. Gonzalo Wallis is the Medical Director over Levine Children’s Hospital’s pediatric heart transplant program. He says it didn’t take long for them to decide a transplant was Ella Kate’s only chance to survive.
“We were in a race against time for Ella Kate, she was starting to get very sick,” he said.
In November, her name went on the transplant list as the tiny baby’s body continued to fail.
“I had actually called into cardiology and I had said, ‘she’s getting worse. She’s gray all the time and she’s not breathing well and she’s making these gasping sounds,'” Melanie said.
Two months later on January 29, Melanie and Mike found comfort in their sanctuary as their pastor at Abundant Life Foursquare Church in Mooresville stopped the service.
“Said our little girl is failing, she’s getting sicker and we need to pray. They prayed over her and they prayed over us,” she said.
As they prayed over Ella Kate, another prayer was being said in Charlotte as the hospital dedicated its new MedCenter aircraft. Two prayers. Around the same time.
That plane would pick up Ella Kate’s new heart a few hours later.
“On our way home from church we got the call that changed our world. Celine, our other coordinator, called and said we got the offer for the perfect heart for Ella,” Melanie said. “If this wasn’t a God moment, I don’t know what could be.”
What’s even more interesting is that the heart beating inside Ella Kate isn’t her blood type. Surgeons performed what’s known as an ABO incompatible heart transplant. It was Levine’s first ever.
“I was seeing a child get sick in front of my eyes and I had nothing to offer, and finally we do this and they’re doing great,” Dr. Wallis said.
At one year and one week old, Ella Kate is thriving. But her parents don’t forget their joy came out of someone’s loss.
“You know that another family has lost their child, and you know that in their darkest moments they were able make the decision that saved my little girl,” Melanie said. “We will be eternally grateful for that.”
MILWAUKEE, Wis. – Where a family finds themselves for a second time, they would never wish any family find themselves once. At the Children’s Hospital of Wisconsin, the Burger family is waiting for a heart transplant for their 3-year-old son, Ivan. Seven years ago, their son Ezra received a heart transplant in the same hospital.
A Berlin heart machine is keeping Ivan alive while the family waits for a transplant.
“Waiting is the hardest part. I carry this pager on me. I sleep with the pager. I have it with me 24/7,” says Leo Burger, the father of the two boys.
He carries the pager to allow the hospital’s transplant coordinator to contact him as soon as a suitable heart can be found for Ezra.
“Maybe it is going to buzz soon, but then it doesn’t, so that’s the hardest part. We only had to wait eight days with Ezra, and we’re on 20- some days now with Ivan. It’s very hard,” says Leo Burger.
Ezra had acute heart failure when he was 18 months old. The experience has helped the family know what to expect with Ivan.
“We know how patient you have to be, and so I feel like this time around I kind of know what to expect,” says Annie Burger, the mother of the two boys.
The family understands better than most how important organ donation is.
According to the U.S. Department of Health and Human Services, 118,368 individuals are in need of an organ transplant in this country. There are currently 75,981 people on an active wait list and, on average, 22 people die every day while waiting for a transplant.
Having Ezra with them while they wait for Ivan’s transplant is a reminder there is hope.
“Yes, and that’s part of the reason Ezra is here with us,” says Annie Burger.
To help with medical expenses a GoFundMe account has been set up. Donations can be made at: https://www.gofundme.com/helpforivan
In 2012, while 3-year-old Riley O’Brien was on the waiting list for a heart/lung transplant, a Courier-Post videographer spent a day documenting his experiences. Courier-Post
MAGNOLIA – Four years after receiving a new heart and lungs from a child donor, 8-year-old Riley O’Brien is facing a whole different set of challenges.
Despite a round of invasive tests impending this week, the nine medications he takes daily, and the worries of contracting a life-threatening infection, Riley had a more pressing aggravation during a recent visit.
A pile of homework for a possible snow day.
The second-grader groaned about the task, appearing like any other kid beleaguered by the demands of school. Then he set to work mugging for a photojournalist’s camera, twisting his grin sideways and swinging his arms as if to run.
“I’m Flash,” he explained, before rearranging his pose.
In truth, his mother said, he’s a miracle child.
Six-Year-Old Transplant Recipient Gets Visit from Batman
Riley was born with heterotaxy syndrome, a rare birth defect affecting the heart and other organs. Before his birth, Carol O’Brien was told her little boy had a 50 percent chance of surviving to see his fifth birthday, according to a blog she’s kept since midway through her pregnancy. At nine months old, he had abdominal surgery and a feeding tube inserted. At 19 months old, he needed supplemental oxygen around the clock, and was put on the transplant waiting list for a new heart and lungs.
By the time his family was called with the news that donor organs had been found, Riley had undergone 26 heart catheterizations to open the scarred blood vessels leading to his lungs. His fingers were consistently blue because he couldn’t get enough oxygen into his blood.
On March 6, 2013, about a month before Riley turned 4, doctors at Children’s Hospital of Philadelphia replaced Riley’s failing heart and lungs with a new set. There were just 23 similar operations that year in the United States, according to the U.S. Organ Transplant and Procurement Network, but pediatric cases are even more rare.
Since 2013, there have been only five heart-lung transplants in children under age 10. CHOP boasts one of the largest heart-lung transplant programs in the world, and has handled more than 25 such operations among children and young adults since its inception.
The survival curve is not great for children with heart-lung transplants, explained Karen McCandless, a nurse-practitioner in CHOP’s heart transplant unit. But some patients have survived for more than 15 years.
“We really don’t know right now where Riley’s course will go,” McCandless said. “He’s doing great right now. He looks amazing.”
When a patient undergoes an organ transplant, McCandless said, “you’re trading one disease for another.”
Riley’s immune system is suppressed to keep his body from rejecting the donor organs. The possibility of infection, long-term side effects and an increased risk of cancer from medication will always be a concern. But he’s come a long way, said McCandless, who has followed Riley’s care since he was a baby. She marveled at his ability to attend school and live from day to day with few restrictions on activity.
That’s the goal, McCandless explained — to enable kids to live as normally as possible, for as long as possible.
“Just to watch all of the changes he’s gone through and see him explode with speech and just being able to do so many different things — it’s quite remarkable,” McCandless said. “We hope he’ll continue to stay this healthy for many more years.”
His medical issues meant he wasn’t able to eat by mouth for years. This year, he eats his school lunch with a different classmate each day, while an aide watches to make sure he chews and swallows his food properly. After watching older boys swallow pills at a summer camp for children with heart issues, Riley learned to do the same, impressing his medical team.
In many ways, he’s a typical kid who loves superheroes, trains and professional wrestling, a passion he shares with his dad, Darren O’Brien. This year, with his parents girding themselves against the possibility of a cold or flu, he started attending school for the first time. His favorite activities at school are recess and gym, where he loves to run, skip and hop on one foot. He won his school’s “Student of the Month” Award in December.
When he caught a virus last month and spent a few days in the hospital, he worried about missing school, while his parents worried about his recovery.
“Any time he’s sick with an infection, it raises his risk of rejection,” Carol O’Brien noted. “If it does, we’ll treat it and hope we just go to the next day.”
He talks at a breakneck speed — his mother has to remind him to slow down and speak clearly. He hugs his classmates goodbye at the end of each school day, a habit that has caused some consternation, but mostly understanding.
“We did all of this so he could live,” O’Brien said. “We have to just hope for the best.”
Kim Mulford: (856) 486-2448; firstname.lastname@example.org