(HOUSTON) -- A 6-month-old girl born with a life-threatening lung disorder is now breathing on her own thanks to a rare double lung transplant.
Kylie Overfield was placed on a ventilator immediately after her birth on Nov. 10, 2023, due to surfactant B deficiency, a rare genetic condition that causes abnormalities in the lining of the lung tissue, making breathing difficult, according to the National Library of Medicine.
The condition, which affects roughly 1 in 1 million newborns globally, can lead to respiratory failure. In Kylie's case, the condition was so severe that doctors feared she wouldn't survive long after her birth, which came on a Friday, according to her mom, Ashley Overfield.
"They didn't think Kylie was going to make it," Overfield, told Good Morning America. "She wouldn't survive the weekend."
Defying the odds, Kylie survived the next three months and, in January, was strong enough to be transferred from the Virginia hospital where she was born to Texas Children's Hospital in Houston.
"I’m telling you, she was feisty," Overfield said of her daughter. "If she was fighting, I was never going to stop fighting."
Overfield was told by doctors that the most effective treatment for Kylie was a double lung transplant, a rare treatment. Only 35 lung transplants have been performed on babies under the age of 1 in the United States over the past decade, according to data from the Organ Procurement and Transplantation Network.
At Texas Children's Hospital, doctors were prepared to take on Kylie's case, having performed more than 100 pediatric lung transplants since 2014, a total the hospital says is more than any other in the country.
"Specifically in lung transplants, we are one of the busiest pediatric lung transplant centers in the country," Dr. David Moreno-McNeill, a pediatric pulmonologist at Texas Children’s Hospital, told GMA.
After arriving at Texas Children's Hospital in January, Kylie was placed on the waiting list for a bilateral lung transplant on Feb. 16.
Just two months later, doctors found a match for Kylie.
On April 17, Kylie, then just 5 months old, underwent a double transplant procedure, receiving two new lungs.
Following the successful surgery, during which a hole in her heart was also repaired, Kylie was able to breathe on her own for the first time in her life.
"I got my baby, so she has a life now," said Overfield, who relocated to Houston with her husband and their two older children. "She gets a chance."
Overfield said she and her family are especially grateful to the mom of the donor baby, who made the selfless choice of organ donation.
"I'm so grateful that she chose to donate the organs because she saved my baby and I'm sure other babies," Overfield said. "My heart hurts for her and I think about her every minute of every day."
Currently, over 103,000 people in the U.S. are on the waiting list for a transplant, according to the U.S. Health Resources and Services Administration.
(NEW YORK) -- A major new report shows stark disparities in breast cancer care, with non-white Americans and those without health insurance far less likely to be up to date with recommended screenings.
Women under the age of 65 who do not have health insurance are 50% less likely to be up to date with breast cancer screening, according to the findings of the 2024 AACR Cancer Disparities Progress Report 2024, released Wednesday by the American Association for Cancer Research, a nonprofit organization focused on breast cancer research.
The report also found that between 2015-2019 Asian and Pacific Islander women had the highest increase in breast cancer occurrences among all racial and ethnic groups.
Black women are at a 40% higher risk of dying from breast cancer compared to non-Hispanic white women, even though they are 6% less likely to develop breast cancer, according to the report.
Earlier this month, another organization, the American Cancer Society, launched a study of 100,000 Black women that aims to figure out why Black women are disproportionately impacted by cancer, including breast cancer.
Last year, a study released in the Journal of the American Medical Association found that Black women had the same risk of dying from breast cancer if they were screened starting at age 42 as the general population had with screenings starting at the age of 50.
The recommended age to start breast cancer screenings for most women of average risk is now 40, according to the U.S. Preventive Services Task Force, which in April released finalized updated guidelines.
The age for routine screening was dropped from 50 to 40 to account for the 2% increase in breast cancer diagnosis rates each year among women in their 40s, according to the USPSTF.
The updated recommendations will not impact insurance coverage, but by law, mammograms should be covered by insurance for all women 40 and older.
The USPSTF recommends that women in their 40s talk to their doctor about their individual risks.
In addition, many doctors recommend that women undergo a breast cancer risk assessment with a doctor by age 25 in order to understand the risk category in which they fall.
Dr. Matthew Schabath, program leader of the Cancer Epidemiology Program at Moffitt Cancer Center and a member of the steering committee for the 2024 AACR Cancer Disparities Progress Report, told ABC News that one of the biggest reasons that some women may not be up to date with recommended cancer screenings is lack of access to transportation.
"A common threat among minoritized and underserved populations… is transportation," Schabath said. "Simply being able to travel to a healthcare provider has been a huge barrier… especially in the case of something like mammography, you can move the bar by having mobile mammography, bringing healthcare to the community."
Experts say structural racism and discrimination also contribute to imbalances that drive disparities.
Patient-focused care will be of the utmost importance in addressing cancer screening and follow-up care, Dr. Robert Winn, director of the Virginia Commonwealth University VCU Massey Comprehensive Cancer Center and steering committee chair for the 2024 AACR Cancer Disparities Progress Report, told ABC News.
"We are aligning with the communities' power to ultimately bring about better health," Winn said.
In the United States, breast cancer is the second most common cancer among women, according to the Centers for Disease Control and Prevention.
Each year in the U.S., around 240,000 cases of breast cancer are diagnosed in women, and around 42,000 women die from breast cancer, according to the CDC.
(NEW YORK) -- Drug overdose deaths fell in 2023, marking the first decrease in five years, new provisional federal data published Wednesday showed.
An estimated 107,543 Americans died of drug overdoses in 2023, according to the Centers for Disease Control and Prevention's National Center for Health Statistics.
This is a 3% decrease from the estimated 111,029 overdose deaths that occurred in 2022 and the first annual decrease in drug overdose deaths since 2018.
Dr. Susan Sherman, a professor in the department of health, behavior and society at Johns Hopkins Bloomberg School of Public Health, told ABC News it's "great" to see the numbers trending downward.
"If you think about it, the numbers are so crazy high that we were below 100,000 the last time we had a dip," she said. "It's great that there's a decrease."
The data shows that overdose deaths involving opioids fell from an estimated 84,181 in 2022 to 81,083 in 2023.
While the majority of overdose deaths in 2023 were due to synthetic opioids, such as fentanyl, there was a decrease from 2022. An estimated 76,226 deaths were linked to synthetic opioids in 2022 compared to 74,702 deaths in 2023.
Fentanyl is up to 50 times more potent than heroin and 100 times more potent than morphine and can be deadly even in small doses, according to the CDC. Other drugs may be laced with deadly levels of fentanyl, and a user is not able to see it, taste it, or smell it.
Unless drugs are tested with fentanyl test strips, it is nearly impossible to tell if they have been laced with the synthetic opioid, the CDC said.
Deaths linked to natural or semi-synthetic drugs, such as morphine and codeine, also fell from 12,135 In 2022 to 10,171 in 2023. However, deaths associated with psychostimulants, including methamphetamine, and cocaine increased from 2022 to 2023.
Some states across the U.S. saw decreases with Indiana, Kansas, Maine and Nebraska experiencing declines of 15% or more, the data shows. However, there were increases in others with Alaska, Oregon and Washington seeing an increase of least 27% compared to the same period in 2022.
In Alaska, opioid overdoses have steadily been increasing since at least 2018, according to the state's Department of Public Health. A state report released earlier this year found 2022 to be the deadliest year on record in Alaska for opioid overdoses.
Additionally, earlier this year in Portland, Oregon, government officials declared a 90-day state of emergency to address the city's growing fentanyl crisis. In November 2020, Oregonians voted to decriminalize small amounts of illicit drugs, but the state reversed course with lawmakers passing a bill earlier this year to recriminalize drug possession.
Some of the progress may be attributed to the U.S. Food and Drug Administration approving the overdose reversal drug Narcan for over-the-counter use in March 2023, becoming available in September.
Narcan, made by the company Emergent BioSolutions, is given as a nasal spray and the active ingredient in the medication -- naloxone -- can quickly reverse the effect of opioids to restore breathing if someone is experiencing an opioid overdose.
Harm reduction groups and other experts have been pushing for easier access to naloxone as one strategy to help prevent some of the tens of thousands of overdose deaths that occur each year in the U.S.
"Sometimes when things decrease, we think, 'Oh, we're done,'" Sherman said. "I think sometimes people think, 'Job's done.' But of course, the job is not done. I worry people [will] lift their foot off the gas."
Sherman said to keep bringing the number of drug overdose deaths down, it's important to keep scaling up interventions that work including making medications for opioid use disorder and syringe service programs more accessible.
(NEW YORK) -- An acrimonious divorce between a Texas couple fighting over their frozen embryos could end up having an impact on in vitro fertilization care in the entire state, and possibly a replay of the controversial court decision in Alabama that briefly ended IVF access in the state.
Caroline Antoun has argued that life begins when an egg is fertilized and claims the U.S. Supreme Court's decision in Dobbs v. Jackson Women's Health Organization -- which overturned Roe v. Wade and left it up to the states to regulate abortion care -- gives her a right to "custody" over their three embryos, despite previously signing over her rights to the embryos to her husband in the event of a divorce.
In August 2022, a trial court judge ruled the embryos should be considered "property" and awarded them to the husband -- Gaby Antoun -- and upheld the agreement between the former couple. That court declined to side with Caroline Antoun's argument that the embryos are living beings.
In August 2023, an appeals court judge affirmed that ruling and declined Caroline Antoun's request to hear an appeal.
The embryos were the key point of disagreement in the couple's divorce, according to court documents.
The arguments
Caroline Antoun is asking the Texas Supreme Court to take up her case and address the "treatment of embryonic tissue during divorce proceedings," arguing the court needs to issue new guidance on the treatment of these disputes since Roe is no longer in effect.
"In the interest of providing the most robust protection to all life, embryos should be treated as children rather than as property during divorce proceedings," Caroline Antoun's petitioner's brief argues.
"While legislative action will undoubtedly be necessary to fill out the framework this Court may provide, the Court is presented the opportunity to reclassify embryos from property to unborn children, and to address in the first instance what rights those unborn children (and their parents) have," the petitioner's brief argues.
Despite acknowledging that an agreement between the couple and their fertility clinic awards the embryos to Gaby Antoun, Caroline Antoun argues that embryos have been designated as property because IVF procedures started after the ruling in Roe v. Wade was issued in 1973. The first live birth from IVF wasn't announced until 1978.
Caroline Antoun also claims she did not know what she was signing and she did not intend to relinquish any future parental rights regarding the embryos. She also says she did not intend for them to be implanted in anyone but herself, according to Caroline Antoun's petitioner's brief.
In responding court filings, Gaby Antoun said the court "properly upheld existing law when it comes to the treatment of embryos." He also argues the post-Roe treatment of embryos is for the legislature to take up.
He also argues the Dobbs decision simply returned the regulation of abortion to the states, but did not find that embryos should be considered people, according to Gaby Antoun's response to the petition for review.
"Texas Legislators have yet to address if frozen embryos should be classified as people instead of property. This is a case that the Court should allow the legislature to have time to enact legislation that applies rather than the Court attempting to create law regarding frozen embryos," according to Gaby Antoun's response.
The Texas Supreme Court has received briefs from Caroline and Gaby Antoun but is still considering whether it will take up the case, according to court records.
Potential fallout
If the state Supreme Court takes up the case and rules in favor of Caroline Antoun, it could be detrimental to IVF treatment in Texas -- months after a similar situation played out in Alabama.
After the Alabama Supreme Court issued a ruling that embryos are children, IVF treatment in the state was suspended at the three largest providers for two weeks until lawmakers passed legislation to restore access.
The American Society for Reproductive Medicine warned, in an amicus brief to the case, that if the court sides with Caroline Antoun, it "could impede access to IVF in Texas and also affect the many thousands of Texans who have relied on IVF to establish or grow their families."
Texas Right to Life, an anti-abortion group, pushed back in legal filings and said a "custody hearing for frozen human embryos does not directly impact the IVF industry."
"Texas Right to Life and its members across the country are opposed to all intentional acts that cause the death of any innocent human life, regardless of their stage of development, location, or whether created naturally or in a laboratory," Texas Right to Life said in an amicus brief.
(NEW YORK) -- The damage of wildfires can expand far beyond the active blaze, as toxic smoke from Canadian wildfires crosses borders, enters homes and triggers health concerns, experts say.
As of Monday, officials said at least 40 of the more than 140 active fires burning in the Canadian wildfires have been labeled "out of control," including one that started on Friday in British Columbia and has since spread to 4,200 acres.
Most of the active wildfires, at least 90, are in British Columbia and Alberta provinces.
However, as the string of wildfires rages in the North, the wildfire smoke spread to parts of the U.S., prompting Minnesota officials to issue the state's first air quality alert of 2024 on Sunday.
Health effects of wildfire smoke
As the threat of an active wildfire season looms, there are steps individuals can take to mitigate the effects of wildfire smoke in their homes, according to Professor Brian G. Henning, director of the Institute for Climate, Water and the Environment at Gonzaga University in Washington state.
"We know that many community members don't have central air, and that means that they may not have the ability to clean their air when we have these really intense wildfire smoke events," Henning told ABC News, warning, "Those have long-term health impacts."
Wildfire smoke poses startling health risks to everyone, but especially individuals with existing health conditions. Wildfire smoke is associated with strokes, heart disease, respiratory disease, lung cancer and early death, according to the Environmental Protection Agency.
Henning added, "Of course, those people who have respiratory issues or heart disease are immediately affected, but all of us are negatively impacted over time."
With the effects of wildfire smoke in mind, Henning explained why clean air should not be considered a luxury in America and that there are less costly alternatives to branded air purifiers.
"We need to bring more resources into our community to help those community members, especially low-income residents, to get improved air filtration capacities," Henning said.
DIY air purifier
Making an air purifier at home can be as simple as using a box fan, a furnace filter that is the same size or larger than that fan and a bungee cord to secure the filter around the perimeter of the fan, according to Henning.
He recommends placing the filter on the back of the box fan, the air intake side, so that the air blowing out of the fan into your home has been purified.
It is important to keep all windows and doors in your residence securely shut to limit the amount of smoke entering, according to Henning.
To learn more about DIY air purifiers visit the Gonzaga University Institute for Climate, Water, and the Environment's resource page on smoke and air quality preparedness.
"There are lots of DIY explanations about how to create a really simple air filtration device for your home. So that next time you have a bad wildfire smoke event you and your family will be better protected," Henning said.
In terms of wildfire protection, Henning believes, "That whole idea of an ounce of prevention is better than a pound of cure is true."
Wildfire smoke is worsening
Wildfires are expected to worsen across the U.S. and by mid-century, the effects of wildfire smoke could bring startling health risks to 125 million Americans, according to a study released earlier this year.
For decades, the effects of wildfires were felt mainly on the West Coast, however, the dangerous rise of wildfires, and the toxic spread of smoke, is becoming a national crisis, and research from First Street Foundation, published in February, shows it's escalating.
"A lot of people in the Midwest and the Northeast never really thought about the AQI," Dr. Jeremy Porter, head of Climate Implications research for First Street Foundation, told ABC News at the time.
"All of a sudden, it's on the news. Every day the weatherman is putting the AQI up at the beginning of the day, we became really familiar with an issue that people in the West have been dealing with for decades," Porter said.
Porter said that there are 83 million people already exposed to a "red day," or what we call an unhealthy air quality day in America.
"If you project the climate into the future 30 years, we're expecting to see that grow to about 125 million people," Porter said.
(NEW YORK) -- For the last few months, JN.1 has been the dominant COVID-19 variant in the United States, making up the majority of cases. A new variant, however, has taken over and may lead to an increase in cases this summer.
KP.2, which is an offshoot of the omicron variant, currently accounts for an estimated 28.2% of COVID cases after making up just 1.4% of cases in mid March, according to data from the Centers for Disease and Prevention.
Over the past four years, the U.S. has seen summer waves of COVID and this summer may also bring a rise in cases, but not severe as in past seasons.
"We've had four consecutive increases of COVID in the summers in the last four years," Dr. Peter Chin-Hong, a professor of medicine and an infectious disease expert at the University of California, San Francisco (UCSF), told ABC News. "We expect an increase this summer too, but it probably won't be large and it probably won't be as profound as wintertime."
Chin-Hong said he would refer to the increase as more of a "swell" rather a "wave" or a "surge."
"Like when you're at the beach and you see the swell coming," he explained. "It's not like a tsunami, it's not like a huge wave crashing, it's just kind of like a little swell. But the swell does mean that some people are going to get sick."
Early data indicates KP.2 has more mutations to the spike protein than JN.1, which the virus uses to attach to -- and infect – cells, which could potentially make KP.2 more infectious.
"The virus' capacity to evolve is anticipated, and it's something we've prepared for in our ongoing public health response," said Dr. John Brownstein, an epidemiologist and chief innovation officer at Boston Children's Hospital and an ABC News contributor. "Given the seasonal patterns observed with COVID-19, a slight uptick in cases could be anticipated this summer, making ongoing surveillance and vaccination efforts all the more essential."
Experts say there is no clear evidence that KP.2 -- which some scientists have nicknamed "FLiRT" on social media but is not an official name used by the CDC or the World Health Organization -- causes more severe illness or is more deadly than previous variants.
While more studies are needed to see if KP.2 is better at evading current vaccines than other variants, Chin-Hong said his experience at UCSF's hospital over the past few weeks seems to indicate that vaccines are continuing to provide good protection.
He said the one common factor among all the patients hospitalized at UCSF with severe COVID is that none of them received the updated COVID vaccine that rolled out in fall 2023.
"If you haven't done, go ahead and get it," Chin-Hong said.
He added that it's especially important for those who are immunocompromised or more susceptible to severe disease, such as being aged 65 and over, to get vaccinated.
COVID hospitalizations have not been increasing in the U.S., a milestone for the nation.
In late April, the latest week for which data is available, the U.S. hit 5,615 COVID weekly hospitalizations. By comparison, there were more than 150,000 weekly admissions at the peak of the omicron variant circulating in early 2022.
Experts say the U.S. is in a much better place to fight COVID than at the start of the pandemic and new variants are a reminder to remain vigilant, but not to panic.
"We have to remember this virus is now part of the respiratory mix we handle yearly just like influenza and, just like influenza, we try to stay ahead of the game to prepare for any possible surge or to understand how well the vaccines are matched," Brownstein said. "This is all bread-and-butter public health surveillance. It's important to stay up-to-date with vaccines and remain vigilant and stay home when sick."
Rick Slayman being discharged two weeks after pig kidney transplant. - Massachusetts General Hospital
(BOSTON) -- The 62-year-old man who received the first-ever pig kidney transplant in the world has died, his family announced on Saturday.
Richard Slayman underwent the four-hour procedure in March at Massachusetts General Hospital and was discharged from the hospital two weeks later on April 2.
The hospital emphasized there was no indication Slayman's sudden passing was due to the transplant.
"The Mass General transplant team is deeply saddened at the sudden passing of Mr. Rick Slayman. We have no indication that it was the result of his recent transplant," Massachusetts General Hospital said in a statement.
Slayman a resident of Weymouth -- 16 miles southeast of Boston -- had been living with Type 2 diabetes and hypertension for many years, the hospital said at the time of his transplant. He was on dialysis for many years before receiving a kidney transplant from a human deceased donor in December 2018 at Massachusetts General Hospital.
However, the kidney began to fail about five years later and Slayman was forced to resume dialysis in May 2023, which the hospital said affected his quality of life.
"Mr. Slayman will forever be seen as a beacon of hope to countless transplant patients worldwide and we are deeply grateful for his trust and willingness to advance the field of xenotransplantation. We offer our heartfelt condolences to Mr. Slayman's family and loved ones as they remember an extraordinary person whose generosity and kindness touched all who knew him," the hospital's statement read.
The kidney was provided by eGenesis, a pharmaceutical company based in Cambridge, from a pig donor genetically-edited using CRISPR-Cas9 technology. The harmful pig genes were removed and certain human genes were added to improve its compatibility with humans, according to the hospital.
In a statement, Slayman's family thanked the doctors and his care team at Mass General Hospital.
"Our family is deeply saddened about the sudden passing of our beloved Rick but take great comfort knowing he inspired so many. Millions of people worldwide have come to know Rick's story. We felt – and still feel – comforted by the optimism he provided patients desperately waiting for a transplant."
"We are extremely grateful to his care team across Massachusetts General Hospital and Mass General Brigham, especially Dr. Williams, Dr. Kawai, and Dr. Riella, who truly did everything they could to help give Rick a second chance. Their enormous efforts leading the xenotransplant gave our family seven more weeks with Rick, and our memories made during that time will remain in our minds and hearts."
His family said one of the reasons Slayman underwent the transplant was to provide hope for the thousands of people awaiting transplants to survive.
"Rick accomplished that goal and his hope and optimism will endure forever. His legacy will be one that inspires patients, researchers, and health care professionals everywhere."
ABC News' Eric Strauss contributed to this report.
(WEBSTER, N.Y.) -- An upstate New York nurse has been accused of falsifying vaccine records for more than 100 children across the state.
The New York State Department of Health (NYSDOH) issued a $55,000 penalty against Sandra Miceli, a licensed nurse practitioner and registered professional nurse at Surviving Naturally in Monroe County.
Miceli is accused of falsifying immunization records for 116 school-aged children for nearly 550 different scheduled vaccinations.
Health professionals say that by lying about the vaccination status of dozens of children, Miceli left them exposed to numerous communicable diseases including measles, chickenpox and polio.
"Falsifying school-aged children's vaccine records endangers both the child and their peers, as vaccination is the best protection against preventable disease," NYSDOH Health Commissioner Dr. James McDonald said in a statement this week.
"Furthermore, this is an example of how the spread of vaccine misinformation undermines the entire system that exists to protect the public's health. The New York State Department of Health will continue to investigate those who falsify vaccine records and use all available enforcement tools against those who have been found to have committed such violations," the statement continued.
Both Miceli and an attorney representing her declined an ABC News request to comment.
Miceli is the owner and operator of Surviving Naturally, a so-called "natural wellness center" in Webster, a suburb of Rochester, according to an investigation by the NYSDOH Bureau of Investigations.
From July 2019 through February 2021, Miceli provided false information to the New York State Immunization Information System (NYSIIS) about 546 vaccinations that never occurred and children who were never vaccinated, according to the health department.
The majority of children that Miceli falsely claimed had been vaccinated live and attend schools in Monroe County and Western New York, but some lived as far away as New York City, according to the NYSDOH.
All of the unvaccinated and under-vaccinated children Miceli claimed were immunized must be fully up-to-date on their required vaccinations or be in the process of receiving the missing vaccinations before returning to school or day care, the NYSDOH said.
In its investigation, the NYSDOH says they learned that Miceli would purchase a small supply of vaccines and pretend to administer doses to children. For one vaccine, she reported that she had administered 30 times the number of doses than she had purchased, according to the NYSDOH.
Miceli allegedly was a longtime opponent of vaccines and vaccine mandates, which she made clear on social media, according to the NYSDOH. On Surviving Naturally's Facebook page, officials say, she posted material claiming vaccines have "unidentified contaminants" that lead to autism, pregnancy miscarriage, cancer, and death.
"In posting anti-vaccination propaganda on social media, Miceli spread dangerous public-health falsehoods and sowed fear about vaccines at the same time that she claimed, as a licensed nurse, to be protecting public health by administering immunizations required for enrollment in schools and day cares," the NYSDOH said in a press release.
Miceli also allegedly expressed her opposition to a New York state bill that eliminated non-medical exemptions from the state's school and day care vaccine requirements. The bill was passed by the state legislature and became law in June 2019.
Miceli was fined $55,000 by the New York State Department of Health for her alleged actions, $30,000 of which she was ordered to pay within 10 days of the stipulation and order going into effect. The remainder of the penalty will be suspended as long as Miceli is compliant with the terms set forth in the order, according to the NYSDOH. Those terms include refraining from facilitating, aiding, abetting, advising, recommending, or conspiring in any scheme to misrepresent vaccination status, the NYSDOH says.
Additionally, Miceli and other staff of Surviving Naturally are "permanently excluded" from the NYSIIS, and are barred from administering any vaccine that is required to be reported to the NYSIIS, the NYSDOH says.
Julie McFadden, a hospice nurse in California, shares information about death on her TikTok account, @hospicenursejulie. -- @hospicenursejulie/TikTok
(NEW YORK) -- Death is something everyone experiences but few people want to talk about.
One nurse is trying to break that stigma, taking to TikTok to talk frankly about death, from what a person feels while dying to how loved ones can best support a person in their final days.
"The death rattle is the most normal thing and to be expected at the end of life, however if you're not used to hearing it, it feels like the scariest thing you've ever heard," Julie McFadden, known as @hospicenursejulie on TikTok, says in one video with nearly 2 million views.
McFadden, a California-based hospice nurse and online educator, goes onto explain in the video how the so-called "death rattle" is a normal process caused by a buildup of saliva in the mouth.
"I always thought my mum was choking when she died. I finally now believe she was not in pain. Thank u," one person commented on the video.
"I wish I could've seen/heard this before I experienced this with my dads passing," wrote another commenter.
Those types of conversations that make people less afraid of death or what their loved ones are going through are why McFadden started her TikTok account, she told "Good Morning America."
"I knew I wanted to talk to people about death and dying, just because people around me were saying, 'You need to tell people the stuff that you're telling us,'" McFadden said, adding that her first-ever video focused on describing what the last six months are typically like for a person on hospice care.
Hospice care is care that begins when a patient is not responding to medical treatments to cure or slow the progress of the condition they're experiencing, according to the National Institute on Aging, a division of the National Institutes of Health.
The support provided by McFadden and other hospice nurses is meant to focus on the "care, comfort, and quality of life of a person with a serious illness who is approaching the end of life," according to the NIA.
McFadden said one of the biggest misconceptions about her job is that it's full of sadness.
"It's not as depressing as people think because it truly feels like you're really, really helping people, and then seeing loved ones help their loved one during one of the most difficult times in their lives is inspiring, and it feels like an honor," she said. "Just to witness the love on a daily basis is truly life-changing. It's not depressing."
Another misconception McFadden said she has learned through her career is that death is "not the worst possible thing." Prior to becoming a hospice nurse, McFadden said she worked as a nurse in an intensive care unit, or ICU.
"What I've learned in hospice nursing and in ICU nursing is that death is not the worst possible thing. I think suffering is far worse," she said. "It has changed my life, me getting to witness so much love I see while my patients are on hospice."
Some of McFadden's most viral videos on TikTok have focused on topics ranging from the visions people see while they're dying to the phenomenon known as the "death stare" to spontaneous movements people make on their deathbed -- like reaching out to hug someone -- to whether or not people starve as they are dying.
In one video, McFadden explains what she says to patients who tell her they are afraid to die, saying, "No. 1, I never try to make it better or make them not afraid."
In another video, McFadden says she recommends that people think ahead about how they want to die.
"Because if you know how you want to die, it will help you decide, with the time you have left, how you want to live," McFadden says in the video. "It's not over until it's over. You're not dead yet."
McFadden told "GMA" the most common question she gets from her followers is whether their loved ones suffered while they were dying.
McFadden said while she doesn't know each person's circumstance, she knows that many of the things that appear as suffering in a person's final days are completely normal. She said she tries to explain to people that human bodies are, "built to live and they're built to die."
"I think there's a lot of grief and trauma around death and dying because people just don't understand what's happening," she said. "But [much] of what people describe is just what end of life looks like."
McFadden continued, "What makes me feel so happy about this page [on TikTok] is being able to educate people that, most likely, your loved one was not suffering ... it's a biological response to the body dying."
Mom gets outpouring of love from Twitter after revealing she has to tell her son she is dying
McFadden added that by talking about death, she hopes to reframe the conversation around hospice care to focus on how it helps a person live out their life in the way they want and with support and care.
She said she also hopes that her talking about death will simply encourage more people to ask questions and have open conversations.
"What I've found is even people who are willing to talk about [death], even in a way of, 'I'm afraid. I don't want to. I don't want to think about this,' there's something about even just saying that out loud that will loosen the fear that's gripped around the topic," she said. "I think we need to start reframing how we look at death and dying, because it's going to happen to all of us."
(MAUI, Hawaii) -- For the thousands of people who survived the Maui fires last August, the trauma of what they lived through still lingers.
Lahaina painter Kirk Boes and his wife Laura have lived on Lahaina together for more than 40 years. They evacuated on August 8, only to return three days later. They were overwhelmed with grief at the destruction left behind.
“There's the initial disbelief, just denial,” Boes told ABC News. “I wasn't even registering what I was seeing. Then it hit me. What really did happen.”
Nearly half of the victims in the Lahaina fire died in Boes’ neighborhood, known as Kuhua Camp. Many of those victims were found on Boes’ dead-end street.
“We lost 19 of our neighbors just in this five house radius right here. People that I've been waving to hello to for a decade,” Boes said, pointing to neighboring homes.
Kirk said he became separated from his wife on August 8, as he ran ahead of their car to find a safe evacuation route. He said they eventually found each other near the Banyan Tree.
“When you go through something this heavy, it brings you together, but it's also like your nerves are raw,” he said.
Laura Boes lost many animals in the fire. “She cried every night, sometimes twice a day… for six months,” Boes said about his wife. For months Kirk suffered from flashbacks and sleepless nights. Eventually the couple sought therapy from a close friend to regain a state of health or well being, or olakino in the Hawaiian language.
The cornerstone of healing for the Boes family is rooted in faith. Kirk was once angry at officials for not sounding the sirens and possibly preventing loss of life. He said he later found a piece of Scripture about forgiveness in the debris of his home.
“And wow, it's like a switch went on in my life that day, and I began to pray for all those people that I was really angry with,” Boes said. “I want them to know that I forgive them, right? Because when I forgave them, I was able to move into healing.”
The pain of losing someone deepens with distance for Kathleen Hennricks, who lives in Oregon. Her sister Rebecca “Becky” Ann Rans died in the fire with her partner Doug Gloege, a few blocks from the Boes’ home. Rans, 57, was a mother of three boys.
“My sister was a, I always call her a free spirit, because she was somebody that went her own path,” Hennricks told ABC. “I know that she absolutely was absolutely the best mother to her boys that she knew how to be and was just such a caring and giving person.”
Hennricks said she has found comfort leaning on people who have also suffered in the tragedy.
“There are so many other people that have been affected by this tragedy, and there is most definitely comfort. And I know that I have found a huge comfort with the people that love my sister. And I think that that does kind of help fill that void just a little bit, is talking to the people that knew her and loved her and hearing stories that I had never heard before. It was like her being here at times.”
Kathleen Hennricks said she has also coped with the loss through art therapy.
Divided Supreme Court rules no quick hearing required when police seize property “One of the things that I do if I'm having a rough day is I do watercolor painting. I really enjoy just getting into my office and just painting… and I know that that's something that she enjoyed as well,” Hennricks said. “It gives me that ability to connect with her, fill that void a little bit.”
Rans’ family has filed a wrongful death lawsuit against the state, the county of Maui, Hawaiian Electric, and the largest private landholder in Hawaii. They claim overgrown vegetation on unkept land, aging electrical infrastructure, and the county’s lack of emergency preparation contributed to Rans’ death. Boes has also filed a lawsuit.
In statements to ABC News, both the county of Maui and the Hawaii State Attorney General office told ABC News they do not comment on pending litigation, and said the ATF and Maui Fire and Public Safety Department are “conducting an investigation into the cause."
Hawaiian Electric declined to comment on the lawsuit, but in an August statement wrote the morning fire appeared to have been caused by power lines that fell in high winds, and was later declared “extinguished” by Maui County Fire Department. The statement claims a second fire in the afternoon began in the same area, after their power lines had been de-energized for more than six hours, and its cause has not been determined. Hennricks also submitted written testimony to Congress.
“Our quest for justice has been, on top of the grief. I think the grief is what drives the quest for justice,” Hennricks said. “It's the fact that we lost her is obviously detrimental. The after effects, the knowing that this could have been prevented, the knowing how many people were affected during this event, has just been catastrophic. It's hard enough to grieve over somebody that you've lost, but to know that so many people that were affected continue to be affected, I think has been probably one of the most devastating things of all. And we want answers,” she said.
Divided Supreme Court rules no quick hearing required when police seize property The fires on Maui not only left behind a trail of physical destruction, but an invisible one, too.
With suicide rates rising nearly 16% among Native Hawaiians and Pacific Islanders from 2021-2022, mental health continues to be a big concern on Maui, especially since all but one full-service medical facility in Lahaina was destroyed.
And the housing shortage and lack of safe spaces for those living with mental health issues has exacerbated the problem on Maui, according to Nicole Hokoana, CEO of Maui Behavioral Health Resources. MBHR operates 3 nonprofits that offer mental health services and substance use treatment across the island.
“The people that we see and have been working with have already been living with, right living with these types of struggles, so the fires really just made everything worse,” she said. “It’s really hard to be well on Maui right now,” said Hokoana.
Hawaii State House Representative Elle Cochran, who represents West Maui, agreed.
“Where is the light at the end of the tunnel? Where is the ray of hope? I mean, where's the help? And people are frustrated and they feel like, there's a lot of people just made it through COVID. They just finally got back on their feet, they finally got to rebuild their lives, businesses, what have you, and now this happens.”
Hawaii was awarded $17 million in federal funding for mental health support shortly after the August fires. And since July 2022, Hawaii has operated the nation’s first state legislated Office of Wellness and Resilience; its aim is to make Hawaii a trauma-informed state and break down barriers that impact health. OWR offers mental health programs at the resorts where displaced victims are sheltered including music therapy.
Cochran says community outreach is crucial, including “to just get out and be boots on the ground literally and walk the beaches, go to the parks, go to the tent cities and what have you, to the hotels.”
David “Kawika” Mattos’ group, Maui Family Support Services Kāne Connections, regularly line the streets of Maui and wave signs to encourage residents to talk about mental health and prevent suicide. Mattos also hosts a men’s group at a resort shelter to help men process their trauma, but also move forward and to support each other and continue to grow as men and fathers.
Cochran said, “I heard from quite a few males that, 'it's hard,' but yet no one looks at them as they should having these types of feelings. And then looking at parents having to be strong and stand up and not fight from breaking down in front of their children, that was also a really huge challenge.”
Another outreach team caring for the Maui community is the Pūlama nā ‘Ohana Team.
“When we were so fortunate as to get some extra funding, because this is outside of what we typically do, what we wanted to do was recruit a team of people that are of Lahaina, of Maui,” Hokoana said. “Already connected, already serving, people that are trustworthy in the community.”
Su-Lynn Pohai Kaihewalu, a care coordinator on the team, said that trust is everything, and often it can begin with supplying food or water. “We gotta remember what the common goal is and it’s to supply our people with their needs. Get stability first, and then they can work on their mental health,” she said.
Adri Haia is also a care coordinator on the team, and leads a women’s circle, or wahine circle. She says there is a stigma around getting mental health on Maui. “We've been taught to hold it in, be strong, figure it out, and when you really need help, and because you've built that armor up, it's so hard to receive,” Haia said. “It's so hard to ask for help.”
With limited resources, mental health experts on Maui are trying to meet people where they are and tailor treatments.
“Not only are we a very multicultural, multilingual community, but I think we've learned from disasters in other communities, that people need different resources. We don't all heal in the same way. And indigenous healing was often communal healing,” Hokoana said. “It's really important to be open-minded and to be person-centered or community-centered, and listen to the people who have been most impacted, and try to deliver a wide range of services.”
One of the services offered on Maui is equine therapy. Every Wednesday Ronda Pali receives a ride from a local transportation company, to travel two hours away from Lahaina, and receive trauma informed care. She is in her tenth session, trying to cope with the trauma of losing her home in the fire, in addition to heart issues.
“The thought of the rebuild of Lahaina is overwhelming. It's definitely a source of strain and worry and fear,” Pali said. “Coming here is helping me keep things in perspective and it's giving me the sense that I am being cared for. My needs are met 100%. I am loved, I have purpose and I feel grounded.”
Spirit Horse Ranch has held more than 950 sessions for survivors looking to heal and recover. Ronda’s individualized therapy includes a self-regulation breathing technique, and deep connection work with her horse Beauty.
“Sometimes she'll turn around and put her face right in my face,” Pali said. “It brings me so much joy when she acknowledges me.”
“We don't get that nurturing that we need for love. So the horses provide this connection through working with them over time, to reconnect to the person’s self and then to another, which is the horse. And then also detach. How many times do we hold onto things that are not healthy? Relationships, jobs, places? So that's a big part of what we do,” DePonte said.
They also offer equine-assisted learning activities.
“We have about 20 different activities that we use in different various forms with the horses to unearth the trauma, heal it in real time with the horse as their partner,” DePonte said. “They love to help nudge the client, nurture the client, hold the client accountable. They'll stomp their foot and say, "You're not telling the truth." And spur them on a little bit. They wind them down, they build them up. It's incredible.”
Pali is also trying an alternative therapy technique called brainspotting.
“We have seen a lot of pain and confusion and loss. So brainspotting helps go through the ocular nerves into an inner resource part of the brain. It's called the reptilian part of the brain, where our memories are stored, our trauma's stored. And using various different techniques, a pointer or gaze spotting to direct and find an activation point, we can lock into very deep trauma that might be creating the reaction today, that fight, flight, or freeze. So if we unlock that, that trigger is no longer apparent, it's no longer holding them hostage,” DePonte said.
Pali said she can feel a difference.
“I feel loads of tension coming out of me every time I come here,” she said.
(NEW YORK) -- On Sept. 10, 2022, Michael and Jill Katz received a devastating phone call that their 21-year-old daughter Sarah had collapsed while out to dinner with friends. They raced from their New Jersey home to Philadelphia, where Sarah was attending college.
Sarah Katz had suffered cardiac arrest and was then transported to a nearby hospital, where doctors informed her parents that she had suffered another cardiac arrest and ultimately passed away.
"The pain is just so hard and so deep," Jill Katz said in an interview with "Nightline" about her daughter's death. "It's not something you get better from. Some people say oh time is all healing. It's not. There's no healing. It's just acclimation."
"It's so many mixed emotions," Michael Katz said. "There are no more photos. There are no more memories. It's the memories that we have. And luckily, we're very fortunate. We've got so many wonderful, incredible memories."
Sarah Katz, a University of Pennsylvania student, was diagnosed when she was 5 years old with a heart condition called Long QT syndrome type 1 (LQT1). The diagnosis prompted her to become an advocate, and she began teaching CPR and defibrillator use when she was just 13 years old. She was also a Red Cap Ambassador for the American Heart Association. Due to her condition, Sarah avoided high-caffeine energy drinks at the recommendation of her doctors.
After Sarah's death, her parents say they were able to pinpoint the cause.
"We had to go pack up her apartment in Philadelphia," Michael Katz said. "When we went there, her roommate told us that she had had a drink from Panera, a Charged Lemonade drink. The reason why the roommate brought it up to us was that she had known about some of the dangers in these excessively caffeinated energy drinks that have multiple other ingredients. And so she was the one to put the pieces together. And then the doctor said that is absolutely something that could have contributed.”
The Katz family filed suit against Panera Bread Co. for wrongful death, negligence and several other counts, claiming that the company failed to properly warn consumers of its dangerous product. The suit alleges that a 30-ounce serving of Panera's Charged Lemonade exceeds the caffeine in a 12-ounce Red Bull and a 16-ounce Monster Energy Drink combined.
Panera Bread issued a statement following Sarah Katz's death.
"We were saddened to learn last week about the tragic passing of Sarah Katz. While our investigation is ongoing, out of an abundance of caution, we have enhanced our existing caffeine disclosure for these beverages at our bakery cafes, on our website and on the Panera app," a spokesperson for Panera told ABC News in a statement.
Amid mounting pressure, Panera Bread announced on May 7, 2024, that the company would remove its Charged Sips drinks from the menu.
ABC News contacted Panera, which did not answer specific questions about its Charged drinks. However, it said it was undergoing a "menu transformation" and was launching low-sugar and low-caffeine options.
In addition to the Katzes' lawsuit, the company faced two others: one from the family of a Florida man who allegedly died after drinking three Charged Lemonades, and another from a Rhode Island woman who claimed the drink caused her permanent heart issues.
Panera has denied wrongdoing in all three cases.
Dr. Roshini Malaney, a cardiologist who spoke with ABC News, warns that some energy drinks, due to their caffeine content, can pose a danger to specific individuals.
"Increasing the heart rate can lead to these abnormal heart rhythms that can be fatal," said Malaney, who did not treat Sarah Katz and is not involved in the Panera lawsuit. "In addition, caffeine can weakly increase that recharging time, so both of these things together can create the perfect storm where someone with an underlying genetic disorder, like Long QT, can go into a fatal heart rhythm."
The FDA does not mandate any specific warnings on energy drink labels. In response to Panera's Charged products, the FDA told ABC News they contacted the company. The FDA added that it’s up to the companies to ensure they understand their responsibility to consumers when adding caffeine to their products.
"I've seen a lot of patients, not just with genetic cardiac issues, just with normal hearts come in with symptoms and abnormal heart rhythms after consuming energy drinks," Dr. Malaney said. "So I would definitely say that the FDA should have some sort of labeling."
Sarah Katz's parents hope they can save other families from this type of tragedy.
"Nothing changes that our daughter's gone," Michael Katz said. "Nothing's going to bring her back. But if we can help, and help others avoid this, this devastating loss for anyone else I think that will be worth the additional pain to make a positive impact."
(NEW YORK) -- The City Council in Long Beach, California, voted Tuesday to ratify a local public health emergency order after an outbreak of tuberculosis sickened several people.
The outbreak is linked to a single-room occupancy hotel, a form of affordable housing meant for low- or minimal income residents, according to the city's public information office.
As of April 29, 14 cases have been confirmed and approximately 170 people have likely been exposed.
Nine have been hospitalized and one person has died.
Here is everything you need to know about TB, including how it spreads, what are the symptoms and how to prevent infection:
What is TB?
Tuberculosis (TB) is caused by the bacterium Mycobacterium tuberculosis, according to the Centers for Disease Control and Prevention.
The bacteria typically attack the lungs but can also attack other parts of the body including kidneys, spine and brain.
Not everyone infected with TB bacteria becomes sick, resulting in two TB-related conditions: latent TB infection and TB disease.
People with latent TB infections will usually test positive for TB via a skin test or blood test but will not feel sick or have symptoms and will not spread TB bacteria to others.
Meanwhile, those with TB disease fall sick often have symptoms including chest pain, coughing up blood, fatigue, weakness, fever, chills, sweating, lack of appetite and weight loss, the CDC said. Additionally, someone with TB disease can spread the bacteria to others.
How does TB spread?
When a person with TB disease coughs, sneezes, speaks or sings, bacteria can spread through the air and a non-infected patient can breathe in the bacteria. These bacteria can settle in the lungs and then move throughout the body.
The disease is not spread by shaking hands, sharing food or drinks, touching clothes, touching bed linens, sharing toothbrushes or kissing, according to the CDC.
The CDC said people with TB disease are most likely to spread the illness to close contacts including family, friends, coworkers and classmates.
Those who are exposed to TB bacteria but not infected cannot immediately spread the disease to people; only people with active disease can do so, according to the CDC.
"Before you would be able to spread TB to others, you would have to breathe in TB bacteria and become infected," the CDC says on its website. "Then the active bacteria would have to multiply in your body and cause active TB disease. At this point, you could possibly spread TB bacteria to others."
What treatments are available for TB?
There are several treatment regimens for TB disease that may last anywhere from four months to nine months depending on the course of treatment. Health care providers may consider specific regimens for patients with co-existing medical conditions such as diabetes or HIV.
Those with latent TB infections, should consult a health care provider for a specific treatment regimen.
About 5% to 10% of people who don't receive treatment for latent TB infection will develop TB disease at some point, according to the CDC.
How to prevent TB
In the U.S., the TB vaccine exists, but it is only for people who meet specific criteria, and should be given in consultation with a TB expert, according to the CDC.
In other countries where TB is common, the vaccine is often given to infants and small children.
The CDC recommends that Americans who visit other countries where TB is more common should avoid close contact or prolonged time with known TB patients in crowded, enclosed environments, and to have a TB skin or blood test upon return to the U.S.
What is the latest on the outbreak in California?
Long Beach City Health Officer Dr. Anissa Davis declared a local public health emergency last week before it was ratified by the City Council on Tuesday.
This allows the city to mobilize resources, accelerate emergency plans, coordinate with other agencies and allow the city to expedite the purchase of necessarily supplies to identify and treat TB.
Long Beach public health officials, however, say the risk of TB for people who live, work, study or visit in Long Beach remains very low.
In 2022, there were 8,331 TB cases reported in the U.S., an increase from 2021 but lower than 2019, CDC data shows. There were 602 deaths in 2021, the latest date for which data is available.
(NEW YORK) -- From vegetables and legumes to fish and fresh herbs, Mediterranean ingredients provide a wide array of health benefits, and the Mediterranean diet is consistently ranked the top overall diet.
Now, researchers have found new health associations between consuming more than 1/2 teaspoon of olive oil a day and lower risk of dementia-related death.
According to a new study published Monday in the journal JAMA Network Open, researchers from Harvard School of Public Health followed the dietary decisions of 92,383 health care professionals over 28 years and found that those who incorporated more olive oil of any kind into their diet lowered their probability of dying from dementia.
The risk of disease-related death was also lowered when participants replaced 1/4 teaspoon of mayonnaise or a teaspoon of margarine with olive oil, and after other lifestyle factors were accounted for, such as eliminating smoking.
Researchers found that consumption of more olive oil, at least 7 grams per day, was associated with a 28% lower risk of dementia-related death.
The American Heart Association has said that consuming virgin olive oil, in particular, may help the body "remove excess cholesterol from arteries and keep blood vessels open."
When looking at substitutions, the research showed swapping 5 grams per day of margarine and mayonnaise with olive oil lowered the risk of dementia-related death by 8% and 14%, respectively. Other vegetable oil substitutes did not show a significant reduction in this risk.
The study population did not have heart disease at the beginning of the study, so the results may not reflect groups who could be at the highest risk for dementia and dementia-related death.
Because this was an observational study, it does not show direct cause and effect, and the self-reported participant questionnaires provided to researchers may not reflect the actual dietary patterns of the population in question.
(NEW YORK) -- Brooke Nelson said she was over 200 pounds and struggling to lose weight when she decided to take part in a clinical trial of a new, minimally-invasive weight loss procedure.
Within six months of the procedure, Nelson said she had lost over 20 pounds and changed how she thinks about food.
"The constant just wanting of food has drastically decreased," Nelson told ABC News' Good Morning America. "There's still moments where I want a chocolate chip cookie, but there's a lot more moments when I find myself wanting something like greens."
The procedure Nelson underwent is called endoscopic ablation, which the lead author of the clinical trial, Dr. Christopher McGowan, says targets ghrelin, the so-called "hunger hormone."
According to McGowan, an obesity medicine, internal medicine, and gastroenterology specialist, the procedure involves inserting a camera into the patient's stomach while fluids are administered to protect the underlying stomach tissue.
Then, a tiny device ablates, or burns, the lining of the upper portion of the stomach that produces ghrelin, a hormone that plays a role in everything from telling your brain you are hungry to inhibiting insulin secretion and helping your body store fat.
The clinical trial of the procedure that Nelson took part in has shown sustained weight loss and decreased appetite for patients, according to McGowan, founder of True You Weight Loss in Cary, North Carolina.
"We do have patients who are a year or more beyond their initial procedure, and what we are seeing is that they continue to have a diminishment, decrease in hunger [and] continue to report greater control over eating," McGowan told GMA, adding that trial participants, on average, reduced their overall weight by 7%.
McGowan said one benefit of endoscopic ablation is that it is a minimally invasive procedure.
Currently, patients who need surgical intervention for obesity have the option of bariatric surgery, different types of which work by making changes to the digestive system, including reducing the size of the stomach, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Bariatric surgery is typically considered an option for adults who "have a body mass index of 40 or more or a BMI of 35 or more with a serious health problem linked to obesity," according to the NIDDK.
Obesity is a medical condition that affects nearly 42% of people in the U.S., according to the U.S. Centers for Disease Control and Prevention. Obesity has been associated with conditions including stroke and heart disease, hypertension and breathing problems such as sleep apnea.
"For patients who might be afraid of surgery, this may be more acceptable," McGowan said of endoscopic ablation.
Risks of the procedure include ulcers and bleeding, according to McGowan.
"Risks of this technology could include things like ulcers, bleeding, somehow injuring the stomach. These were things we were really careful about," he said. "In this case, everything was mild and that was the cramping and gas and nausea, things you'd expect when you'd perform a procedure on the stomach. But there were no complications whatsoever."
The clinical trial led by McGowan included just 10 female patients and was the first time endoscopic ablation targeting ghrelin had been tested in humans.
McGowan will present the results of the trial formally later this month at a medical conference, known as Digestive Disease Week, in Washington, D.C.
From there, the procedure will need to undergo additional testing to determine safety and long-term outcomes before it could eventually be made available to the general public.
The Jarvik 2015 15mm VAD, a miniature heart assist device, is shown. (Jarvik Heart, Inc.)
(NEW YORK) -- New promising data finds that a small heart pump device the size of a AA battery could help keep children in need of a heart transplant alive and at home as they wait for a new heart.
With this small implantable device, children can go home until their transplant date instead of waiting weeks or months in a hospital.
The device is not yet approved by the U.S. Food and Drug Administration and will need more study. But experts say it's a real medical advancement for hundreds of children with heart failure.
Every year, between 200 and 400 infants and children waiting for heart transplants are faced with a grueling option as they wait for a transplant, getting a surgically-implanted mechanical heart pump weighing up to 200 pounds with garden-hose sized tubing attached to their bodies, potentially for weeks or months until they receive a heart transplant.
Results published Tuesday in the Journal of Heart and Lung Transplantation have demonstrated that a miniature heart pump device called the Jarvik 2015 Ventricular Assist Device can be feasibly implanted in infants and children.
This feasibility study included seven children ages 8 months to 7 years old. The device is surgically implanted onto the heart, exits the body through a cable and is powered by a battery pack that is essentially worn as a belt.
Many of the children in the study spent many months using the device before their transplants. All seven children survived, however one child experienced a stroke on day 53 following device implantation.
Five children went on to receive heart transplants, one recovered without the need for heart transplant, and one required a different support device.
Notably, the children were able to participate in normal play activities, and most did not report feeling bothered by the device while sleeping or awake. This raises the potential for the implantable device, if approved for wider use, to be managed by patients and their family members at home while awaiting heart transplant news.
Currently, the only ventricular assist device for children whose hearts are failing is the Berlin Heart, which can weigh up to 200 pounds depending on the model and connects to a child using two large blood tubes the size of garden hoses.
As such, it requires complex care considering all its potential complications, including stroke, infection and blood clots, and patients are unable to go home with the device.
In these cases, children may endure weekslong to monthslong hospital stays with the Berlin Heart ventricular assist device attached to them while waiting for news of a donor heart.
"This is a huge step forward for implantable ventricular assist devices for young children," Dr. Bradley Marino, executive co-director of the Pediatric and Adult Congenital Heart Center and division chief of Cardiology and Cardiovascular Medicine at Cleveland Clinic Children's, who was not involved in the study, told ABC News.
"[The device] is a novel opportunity where we could have a new ventricular assist device that would allow infants and young children to potentially go home," Marino said, adding that it could "potentially de-compress our cardiac intensive care units, which will allow for increased capacity, as well as provide an improved quality of life for the children and their families while they are waiting for heart transplantation at home."
Though the study was suspended after the eighth patient consented to participate due to financial issues with the manufacturer, it has been given the green light to proceed onto the next steps and enroll 22 patients in a pivotal trial involving multiple major medical centers.
"If the pivotal trial shows that the Jarvik 2015 is safe and effective, this would be a huge advancement for the field, but we are likely years away from this being more widely applicable," said Marino, noting the complexities of coordinating a multi-center pivotal trial and device manufacturing costs, among other barriers.
Marino also cautioned that it remains unclear how this device would perform in children with more complex heart anatomy, and since none of the children in the feasibility trial were discharged to home, it remains unclear if the device is safe for discharge.
