Plans are being made to establish the first Irish heart transplant programme for children, amid safety concerns about current arrangements that see patients transferred to England for their operations.
Officials from the Organ Donation and Transplant Ireland office met medical staff at Our Lady’s Children’s Hospital earlier this month to propose setting up the State’s first paediatric heart transplant programme.
The clinical expertise to set up a programme and carry out the operations now exists in Ireland, according to Prof Jim Egan, director of Organ Donation and Transplant Ireland. Discussions are ongoing with UK authorities about formal arrangements for sharing donated organs between the two jurisdictions, he said.
Although individual paediatric cardiac transplants have been carried out in the Republic in the past, there is no programme and children are generally sent to London or Newcastle for their operations. This is due to the low numbers involved – about a handful a year – and the low number of donor hearts that come available.
Died waiting for transplant
Last month, 10-year-old Gavin Coyne died in England while waiting for a heart transplant, after which his family called for a paediatric transplant unit here.
It has also emerged that children awaiting a transplant in the UK cannot be guaranteed transport within the required time frame due to staffing difficulties in the Air Corps.
Prof Egan said that while no problems had arisen on specific transports, there was a risk and the situation was “challenging”. “If you’re trying to get a child requiring a new heart from Galway to London within four hours and there’s a storm, that’s not easy.”
Fourteen children were referred to the UK last year for heart transplants. The HSE paid the UK’s National Health Service over €500,000 for the service in 2015.
Crumlin hospital would have to be approved as a transplant centre by the Health Products Regulatory Authority before any operations could be performed there. Dr Egan estimated it could take several years before the programme became a reality.
Meanwhile, Minister for Health Simon Harris said proposals for the creation of an opt-out system of consent for organ donations will be brought to Cabinet shortly.
Mr Harris said the proposals, replacing the current system whereby potential donors have to opt in, would be developed as part of an over-arching policy on human tissue. A public consultation on the proposals would be required first and this will be launched before the end of the summer.
Very few people die in circumstances where their organs can be used for transplants so it is incumbent on policymakers and doctors to ensure all donor opportunities are followed up and that they lead to transplants, where possible, according to Mr Harris.
Speaking at the launch of Organ Donation Awareness Week, the Minister suggested the donor population could be expanded by extending criteria for donations, extending the age of potential donors and using medical technology to harvest organs not previously considered.
A record 50 kidney transplants were carried out last year using organs provided by living donors. Overall, 280 organ transplants were carried out, the second highest yearly total since the programme began. A further 16 Irish patients, including nine children, received transplants in the UK.
Last year saw 172 kidney transplants, up from 153 in 2015. The highest number was recorded in 2013, when 185 kidney transplants were performed.
Finding deceased donors has become more difficult with the fall in road traffic deaths over recent years, but the living donor programme continues to grow. Last year, there were 77 deceased donors and 50 living donors, up from 33 in 2015.
In addition, 58 liver transplants were carried out at St Vincent’s last year, along with 35 lung transplants and 15 heart transplants at the Mater Hospital.
Organ Donor Awareness Week runs from April 1st to 8th.
MATTOON — Lake Land College will host on April the 2017 East Central Illinois Heart Walk, which will honor Mattoon infant Zale Walk, who is a heart transplant recipient.
Teams of walkers are being sought for the Heart Walk, a fundraising and community outreach event that is part of the American Heart Association’s fight against heart disease and stroke.
“It is a celebration of those who are survivors and a tribute to those we have lost,” said Carol Floyd, field operations director for the association.
Floyd, a former Mattoon resident, said Zale has been chosen as the honorary chairman for this year’s Heart Walk because his parents, Vince and Katie Walk, have a wonderful story to tell. She said this story shows the local impact of the type of research and development that the Heart Association funds.
Before he was born on April 18, Zale’s parents learned that he needed a heart transplant due to a valve defect. A little more than four months after his birth, Zale received his new heart and became the 250th transplant recipient at Ann & Robert H. Lurie Children’s Hospital of Chicago.
“That is his other birthday. That is his heart birthday,” Vince Walk said of the Aug. 22 transplant.
Vince Walk said his son has been doing well, despite a weakened immune system, and has been home since late January. Walk said he has appreciated all the support he and his family have received from the community, including his students at Mattoon High School.
Walk said he also appreciates the Heart Association’s efforts to fund research for treating heart-related ailments and he hopes that Zale’s involvement with the Heart Walk will help bring more attention to these efforts.
“You never know when you are going to be faced with something like that,” Walk said.
The association holds Heart Walks as fundraisers for research, education and awareness programs in the fight against heart disease and stroke, which the association reports are “America’s No. 1 and No. 4 killers.”
Heart Walk teams are comprised of heart disease and stroke survivors, employees from local businesses, and other community members. To receive this year’s Heart Walk T-shirt, walkers are encouraged to raise $100 or more by collecting donations from the community.
Floyd said the Heart Walk has been held indoors at various local venues in past years, but Lake Land’s offer of the use of its campus will provide a great opportunity for an outdoor walk.
“The original intent was to get people outside and moving as a family,” Floyd said. “Exercise and diet are key to heart healthy lifestyles.”
Jean Anne Grunloh, senior executive to Lake Land’s president, said the college is honored to host this year’s Heart Walk.
Grunloh said the campus will provide a beautiful venue for the walk and the West Building’s large Farm Credit Room can provide indoor space for the opening ceremonies and other activities. She added that the walk could be moved into this building’s wide corridors if it rains.
In addition, Grunloh said the Heart Walk will provide a great community service opportunity for Lake Land and its Allied Health Division students.
“We want to promote heart-healthy lifestyles. We serve students and we serve the community, so we though it was appropriate for us to do that,” Grunloh said of hosting the Heart Walk.
Registration is set for noon April 29 at the West Building, followed by the opening ceremonies at 1 p.m. and the walk at 1:30 p.m.
This year’s event will feature half-mile and three-mile walks. Booths at the walk will offer health screenings and more. Other activities will include a tribute wall, a Survivor Lunch provided by Subway, nutritious snacks, “Hands Only CPR” lessons, and team photos.
Subway and Walgreens are national Heart Walk sponsors. Local sponsors include Sarah Bush Lincoln Health Center, First Mid Illinois Bank & Trust, First Mid Illinois Insurance, and Consolidated Communications. Bub McCullough and Renee Fonner of Cromwell Radio Group’s 101.3 WMCI will be the emcees.
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; email@example.com
Boy gets life-saving transplant as his heart fails (Family Photos)
GOSHEN, Ohio (WKRC) – A young boy now has his new heart!
Peyton West’s family said he was doing well Friday, March 10. His heart was beating strong.
The 13-year-old was born with half a heart which recently started failing him. He learned he got a donor Thursday morning and went into surgery that evening.
Peyton will be in the hospital for at least another month. His family was looking forward to him being well enough to go to a Reds game.
GOSHEN, Ohio (WKRC) – A 13-year-old boy’s friends, classmates and teachers came together Thursday night, March 9, at Goshen Middle School to pray for him as he underwent surgery for a heart transplant.
Peyton West’s heart started to fail in December. He was born with Hypoplastic Left Heart Syndrome – a defect that left him with half a heart. His parents always knew that he may need a transplant but it’s happening much sooner than they anticipated.
“The last month and a half he went downhill quick and it’s hard to watch your son go through that,” said Melissa West, Peyton’s mother.
Peyton’s been at Children’s Hospital since the beginning of February. 15 days ago he was placed on a the transplant list. Just before 2 a.m. Thursday morning, the Wests received a phone call that a heart had become available. Peyton made the announcement on Facebook live Thursday afternoon.
Melissa: “What do you have to say?”
Peyton: “I’m getting my new heart today.”
Melissa: “Are you excited?”
Peyton’s family couldn’t be happier that he’s getting a new heart but they know it comes to them as another family mourns a loss.
“We pray for the donor and their family because right now is their toughest time in their life because they lost somebody. Then again it’s the happiest moment in our life because now we have the opportunity to give Peyton a heart,” said Corey West, Peyton’s father.
And Peyton’s younger brother has been hoping he’d get better.
“I really want him to come home and play with me and like, I want him to be able to swim and play and all that,” said Nolan West.
In Goshen, many people are pulling for Peyton including his classmates.
“It’s awesome. I was so happy. Relieved,” said Makayla Warren, who attended the vigil.
Peyton will have to stay in the hospital for a month after the transplant. After that, his family will have to stay in a hotel near the hospital in case there are complications. His family hopes to take him to some Reds games in the Spring.
p class=”byline-section”> Published:
17:22 EST, 10 March 2017
17:22 EST, 10 March 2017
A little boy born with a rare congenital heart defect received a heart transplant on Friday, March 3 after 211 days of waiting.
The touching moment five-year-old Ari Schultz finds out that he will receive a new heart at Boston Children’s Hospital was captured by his parents and uploaded to YouTube.
His father begins with asking Ari about wanting to go to a baseball game.
Ari Schultz, five, suffers from hypoplastic left heart syndrome and aortic stenosis. This means that the left side of his heart is underdeveloped. As of March 3, he had been waiting 211 days for a heart transplant. Pictured left: The moment his parents tell him he will get a transplant
At 11.32pm on March 3, Ari’s new heart began beating following the operation. His parents filmed his reaction to the news that he would soon be receiving a transplant
Ari’s father asks if he would like to go to Red Sox game this season. Parents then roll out the information that not only did doctors find a ‘perfect’ match for Ari’s transplant, but also the operation could happen very soon, maybe the same day. Pictured: Younger Ari with his mother
He says: ‘Do you want to go to a Red Sox game this season?’
Ari answers in the affirmative.
His father goes on to say that he could actually be able to go to a game because a new heart for the boy – who suffers from hypoplastic left heart syndrome and aortic stenosis, basically meaning he was born with the left side of his heart underdeveloped – has been found.
Ari seems to stare in disbelief as his father tells him his doctors found him a ‘perfect’ match.
Ari’s voice cracks as he exclaims: ‘They found one?’
But the excitement is short-lived as the inquisitive youngster asks when this transplant will occur.
His parents have another surprise for him, though: It will happen quite soon, conceivably the same day.
The operation occurred on March 3, and his new heart starting beating at 11.32pm that night, his family wrote on his website, Echo of Hope.
Ari’s voice cracks as he exclaims: ‘They found one?’ He then wonders if the anesthesia he will be under during his operation will make him forget about playing baseball, but his parents assure him he will only forget the operation
Ari underwent two successful heart operations before he was born after an 18-week ultrasound showed his heart defect
In his spare time, Ari loves Harry Potter and baseball and the Boston Red Sox. In the video, he asks if he will be able to go home soon. It is expected that he will need to remain in the hospital for one to three months following the operation
He asks, pointing more towards his stomach: ‘Are they going to find a good spot to put it?’
His parents direct his finger more towards the area of his chest.
He hopes he will be able to go home soon, but his parents tell him it may take some time for him to get used to the new heart.
Ari is worried that he might need an IV, but his parents tell him he will be under anesthesia, so even if he does need one he will not remember it.
But this poses another problem.
After asking a series of questions about anesthesia, he fearfully asks: ‘Means I won’t remember when we play baseball anymore?’ His parents reassure him that he will only forget the operation.
His parents ask: ‘Are you scared?’
‘Are you excited too?’
‘You know mommy and daddy will be here with you the whole time.’
‘I love you so much.’
Going forward, there are many things he will need to avoid – Advil, tattoos and most of all, Yankees paraphernalia – but his family wrote that ‘the hope is that whatever we see will be manageable, and we’ll keep on keeping on whatever happens’
Ari poses with his father at a baseball game, a pastime he may be able to enjoy again this season following his heart transplant. The video of his reaction to his impending heart transplant has garnered more than 180,000 views
The video, which has been viewed more than 180,000 times since it was uploaded on March 6, ends with the family playing baseball together.
Ari was diagnosed at his 18-week ultrasound with the heart defect and underwent two successful operations before he was born to ensure he would have a four-chamber heart as opposed to a two-chamber one, his family wrote on his website.
After the successful transplant, Ari will spend between one and three more months in the hospital before he can come home.
Risk factors include his body rejecting his new heart, him getting an infection or ‘post transplant lymphoma.’
His family listed some of the things Ari, who loves baseball, Harry Potter and his siblings, will need to avoid.
These include Advil, tattoos, heavy contact sports and – being in a Red Sox family – Yankees paraphernalia.
Considering what comes next, his family wrote: ‘It’s all maybe. Add up all the maybes and we’ll see some of them for sure, but the hope is that whatever we see will be manageable, and we’ll keep on keeping on whatever happens.’