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My niece lives in a hospital — there might be nowhere else for her to go

My niece lives in a hospital — there might be nowhere else for her to go

Boston Globe19-03-2025

She has stayed in the hospital because she has nowhere to go — despite herculean efforts from her parents and the hospital. Caitlin was born with Cornelia de Lange syndrome (CdLS), a rare genetic condition, and they haven't found a facility that can handle her needs. She can't go home.
The National Institutes of Health
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CdLS causes a range of physical, medical, and mental challenges, but each case is different. Caitlin is on the severe end. Her growth is stunted: She is only 4 feet tall despite being 21 years old. She's on the autism spectrum and is nonverbal; it's estimated that her brain functioning is roughly that of a 1- or 2-year old. She has significant levels of hearing loss and visual impairment.
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Because of a malformation of her digestive organs, she was fitted with a feeding tube when she was young. She is, as noted in her records, 'medically fragile' and has survived a host of medical issues, including septic shock, respiratory failure, and mini-strokes. Her parents have been working constantly from the moment she was born to keep her alive.
It's been more difficult than they imagined when they started this journey — not least because there are so few resources for kids and adults like Caitlin. With the Pappas Rehabilitation Hospital for Children, in Canton, slated for closure, there is about to be one fewer.
'We don't treat her any differently than anyone else'
When I first met Caitlin in 2009, I was visiting my future husband's family for the first time. He didn't tell me about her condition ahead of time. When I asked him why on the drive home, he replied, 'Caitlin's a part of our family — we don't treat her any differently than anyone else.'
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Caitlin was 5 years old at the time but looked younger. She walked around, humming intermittently, with a musical toy held up to her ear (the better to hear the sound and experience the vibrations). Her parents, Steve and Sara Igoe, seemed stressed but cheerful, and their older daughter Lindsay sat nearby, quietly reading a book. A MassHealth personal care attendant followed Caitlin around and kept her from grabbing anything dangerous. Family members spoke to her lovingly, inquiring about what she was up to and giving her hugs when she passed by them.
Sara holds Caitlin's hand while she listens to the sounds produced by a toy.
Lane Turner/Globe Staff
She was full of personality. I could tell when she was feeling sunny or irritated. When it was the latter, she'd toss away her toy or cheekily knock something over. She was also sweet. At one point during my visit, she stopped and assessed me for a moment. Deeming my lap suitable for her purposes, she climbed into it for a momentary break.
But even then, Caitlin's parents were struggling to figure out how they would care for her as she grew. The prospect of her adulthood worried them most. In Sara's earliest conversations with the Department of Developmental Services in the 2010s, it had been made clear: There were limited spots available for adults in state-run residential facilities and group homes. For the best chance of placement, they'd need to make sure Caitlin was placed in a residential facility by the end of high school.
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After years in her local school system, Caitlin began attending a residential program at the Perkins School for the Blind in 2016. The staff quickly recognized what her family had known for a long time: Her behaviors, including moans, grunts, and gesticulations, are her attempts to communicate. The teachers knew how to help, and Caitlin thrived. Her skills advanced, and the staff helped her parents implement an at-home communication system of pictures, objects, and basic American Sign Language.
For a time, things seemed challenging but manageable. That changed in 2022. She'd had surgery to remove some necrotic intestines a few years earlier, which led to complications, infections, more surgeries, and, eventually, a new kind of feeding tube. It suddenly became much more difficult to manage Caitlin's feeding process. Perkins didn't have the capacity to handle it, so she couldn't go back there.
Steve and Sara were desperately worried — it was back to the drawing board, with even fewer options than before. Finding a new facility took several months, even with help from DDS. In 2023, Caitlin finally began attending a school in Assonet that offered residential programs for children and adults with disabilities. They hoped she could stay there long-term.
That year, when I saw Caitlin during the holidays, she was visibly unhappy. Her parents shared that most of her progress in communicating was lost. She emitted low sounds that sounded like grunts until I realized, with a shock, that she was sobbing quietly to herself.
Just a few months later, she ended up in Boston Children's, for a stay that would last more than a year and counting.
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Desperately searching for options
Caitlin now has almost no small intestine left, so doctors had to insert a central line to administer formula and medication. It's extremely delicate, because it needs to remain sterile at all times. But Caitlin finds it incredibly uncomfortable, so she pulls and scratches at it. When it's dislodged or dirty, it requires emergency sterilization due to the high risk of bloodstream infection. The central line dressing needs to be replaced once a week, a process to which Caitlin often reacts with aggressive agitation. It requires up to four medical professionals to complete the procedure.
Now, any illness is cause for concern. Specialists at Boston Children's have monitored her carefully, but she's still gotten pneumonia since she's been there. Despite her vulnerability to infection, staying at the hospital for the rest of her life is not a solution; a person with CdLS can live many years into adulthood.
Caitlin sits in her hospital room with her collection of sound-producing toys.
Lane Turner/Globe Staff
At-home care isn't an option, either. Her needs are too complicated. Although Caitlin's been approved for an at-home nurse, she's only eligible for 27 hours a week. And that nurse would not be able to manage her dressing changes and routine medical procedures alone. So Steve and Sara have gone searching, again, in vain, for another residential solution.
To date, they've reached out to 35 facilities, going as far as Pittsburgh to see if there's one that will accept Caitlin with her current needs. Few are able to handle a central line, and of those that are, Caitlin falls outside other criteria. For some facilities, her behaviors are too intense to manage effectively; for others, she's disqualified because she's ambulatory. She's not a great fit for a traditional nursing home because she's young, not to mention that she'd need communication and other support to thrive. But that might be her only other option anyway.
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In late 2024, Caitlin was in the midst of an evaluation for the Pappas Rehabilitation Hospital. Caitlin's parents were hopeful; they'd heard good things. But Governor Maura Healey announced in January 2025 that the facility would be
In February, Sara heard from the Massachusetts Executive Office for Health and Human Services. They say they are working on a short- and long-term plan for placement, although there is nothing definite yet.
So, for the moment, Caitlin stays in the hospital, and she waits.
The wait
Caitlin is not alone. In early 2025, Sara reached out to the CdLS Facebook
Some recounted their own children aging out of or not qualifying for government programs or watching state-run facilities close and send their residents to private group homes. Many parents tried to care for their children at home because the facilities available to them were so low quality. (The Boston Globe
Caitlin rests in her hospital bed.
Lane Turner/Globe Staff
One parent in New England wrote, 'I feel like we're in an in-between place. The push for home- and community-based services has not caught up to the closing of institutions, leaving families with not enough supports or nothing.' Another parent added, 'They are, in my opinion, the forgotten.'
It is difficult to quantify the toll all of this has taken on Steve and Sara, on their well-being, their work, their relationship with Lindsay. They're exhausted. Of course they are.
They feel grateful, too. Not every family in this situation has the resources they do: for a patient advocate, long hospital stays, a flexible workplace. But after all of this, they vacillate between hope that a facility will materialize and fear that it never will.
'Sometimes we think to ourselves,
Let's just take her home and get her out of the hospital
. But then we worry something will happen, and she'll just end up back here," says Steve.
'The last three years have been the hardest,' adds Sara. She pauses. 'But it has really all been hard.'
Caitlin has done her part to fight, all her life, to exist among us. And her parents have fought on her behalf. It's hard to watch them and others like them fall through the cracks, and harder still to contemplate the possibility that they'll never have a reprieve.
For now, her extended family must stay at arm's length. My children ask to visit 'cousin Caitlin,' but we worry about getting her sick — so sick that she might not recover. We are all united in protecting this fierce, fragile girl.
I did manage a rare visit with Caitlin in early March. I watched the hospital staff change one of her dressings (aside from a central line, she has an additional tube for some medications). It required three medical professionals and one parent. Caitlin writhed and moaned when the nurses touched the tube lying flush with the irritated skin of her belly and as they gently wound gauze around the opening to contain leakage. Sara explained that it was often much worse, with Caitlin bucking and arching her back, tearing at her tube and trying to escape.
Stephen and Sara sit with their daughter in her hospital room.
Lane Turner/Globe Staff
When they were done, though, Caitlin was mostly back to her giggly self. She held a music toy to her face, meandered around the room stopping often to visit her parents, looked at me, and smiled. Just like old times, she spotted my lap, deemed it suitable, and plopped down onto it. I squeezed her tightly and hoped the next time I'd see her, it wouldn't be in a hospital room.

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AAMC Director on NIH cuts: "Health Will Suffer"
AAMC Director on NIH cuts: "Health Will Suffer"

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AAMC Director on NIH cuts: "Health Will Suffer"

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Congress is moving backward on funding for Alzheimer's disease research
Congress is moving backward on funding for Alzheimer's disease research

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Congress is moving backward on funding for Alzheimer's disease research

At first, Alzheimer's patients forget only small things, recent events. As the disease progresses, it kills parts of the brain where memories of yesterday are stored, then the memories of last week, last year. Over time the forgetting expands. At the final stages, parents forget their children, husbands forget their wives. When I worked at a nursing home for people with memory disorders, I learned that a person with Alzheimer's may retain her sense of humor, her capacity for joy, her preferences for pecan pie, all while forgetting the basic outline of her own life. I lead a research team focused on Alzheimer's disease, mostly funded by the National Institute on Aging (NIA). I have loved ones with Alzheimer's, so my work is personal. I know my work is not likely to cure the people I love in time — but I hope to contribute to the science that does find a cure, or better yet, a way to prevent anyone from ever developing Alzheimer's. Early in my career, progress felt painfully slow. Back then, the budget for all of the National Institutes of Health — including NIA and institutes funding research on cancer, heart disease, children's health or any other health topic — amounted to about $95 per person in the U.S. The portion for NIA was about $3.60 per American. You read that right: The average amount that everyone in the U.S. contributed to research on older adults for the entire year averaged less than a kid's weekly allowance. NIA rejected over 8 out of 10 new research ideas, many very promising ideas, because there simply wasn't enough money. In 2011, Congress passed a law prioritizing Alzheimer's and other diseases that cause dementia (like Parkinson's disease). Congress told NIA to send out a call for researchers to focus on prevention and cures for these conditions. NIA did just that and the scientific community rapidly responded with increased research on Alzheimer's and dementia. And that research is paying off. I am an inveterate complainer (ask my family), but I'll admit — we are making real progress. What have we learned? Multiple disease processes work together and must combine to cause dementia. This offers more opportunities to prevent dementia. Many things people can do — starting in youth (stay in school) and extending through older age (get that cataract surgery your doctor recommended) — seem to delay dementia. Two medications were approved to slow the progression of memory loss in early Alzheimer's patients. Some drugs used for other diseases, like diabetes or hypertension, also may help prevent dementia. We are testing these hypotheses, trying to prove whether these strategies really work and find even more ways to slow or prevent dementia. And what is the cost of this progress? Last year, the entire National Institutes of Health budget was about $139 per U.S. resident, with 5% of that dedicated to Alzheimer's research. That amounts to each of us chipping in about $7 per year to end Alzheimer's. As a researcher and a family member, I want to say: Thank you, America. But Congress appears to have forgotten all of this progress. The new proposed federal budget slashes investments in health research overall, with about 40% less money for NIH. Under the new budget, we expect that over 96% of grant proposals on Alzheimer's would be rejected due to lack of funding. Do our representatives think we would prefer an extra $3.50 per year instead of more progress toward curing Alzheimer's disease? I made a promise to never forget the people I love whose minds have been decayed by this disease. I wonder if the politicians who voted for this budget don't know anyone affected by Alzheimer's or if they have just forgotten what it's like to lose someone to dementia. I hope you will join me in fighting to preserve funding to end Alzheimer's disease and for research to improve the health of all Americans. As a person in Oklahoma, your voice counts more than residents of almost any other state because Oklahoma representatives are very conservative. If Oklahomans speak out to support health research, the nation will listen. Maria Glymour began her science career in Kinta, Oklahoma, in Mr. Hall's classroom, trying to reconstruct a possum skeleton. Now she is a professor of epidemiology at the Boston University School of Public Health. This article originally appeared on Oklahoman: Why is Alzheimer's research being ignored by Congress? | Opinion

HHS budget cuts threaten America's health and innovation—including in NC
HHS budget cuts threaten America's health and innovation—including in NC

Yahoo

time10 hours ago

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HHS budget cuts threaten America's health and innovation—including in NC

(Photo courtesy of National Institutes of Health) By slashing nearly one-fourth of the Department of Health and Human Services (HHS) discretionary budget, the Trump administration's proposed fiscal year 2026 budget signals a dramatic retreat from evidence-based health research, disease prevention, and innovation. This $33.3 billion cut—to just under $95 billion—may be framed as a reorganization to tackle chronic disease and reduce healthcare costs, but beneath the rhetoric lies a troubling dismantling of the very infrastructure designed to advance public health, drive medical discovery, and protect our most vulnerable. Nowhere is the proposed rollback more alarming than in the realm of scientific research. The National Institutes of Health (NIH), the engine of U.S. biomedical innovation from which we all benefit, would see its funding slashed by $18 billion—from $45 billion to $27.5 billion—and its structure gutted, consolidating into just eight institutes or centers. Such a move ignores decades of bipartisan support for the NIH and undermines the United States' global leadership in medical research. These cuts will decelerate clinical trials, delay therapies, and disincentivize young scientists from entering the field. The American Cancer Society Cancer Action Network warns that the 37% cut to the National Cancer Institute would 'stall scientific breakthroughs' and hamper efforts against the increasing incidence of cancer across America. Translation: lives will be lost waiting for discoveries that now may never happen. The effects of these cuts will be especially devastating in states like North Carolina, a national leader in biomedical research, academic medicine, and public health innovation. Institutions such as Duke University, the University of North Carolina at Chapel Hill, Wake Forest, and East Carolina University receive hundreds of millions annually from NIH and HHS to fund research on everything from cancer to mental health to rural healthcare delivery. If these funding sources dry up or diminish, North Carolina's research infrastructure—its labs, its jobs, and its ability to develop life-saving treatments—will likely suffer. In 2022 alone, North Carolina institutions received over $1.8 billion in NIH funding. These dollars supported everything from HIV prevention programs in underserved areas to groundbreaking cancer immunotherapy research. The University of North Carolina's Gillings School of Global Public Health, which has led critical studies on pandemic response and maternal health, faces a direct threat under these budget proposals. And Duke's renowned Clinical and Translational Science Institute, which works to turn research into real-world healthcare solutions, would likely struggle to maintain operations at current levels. Beyond academic campuses, the proposed cuts threaten North Carolina's community health centers, rural hospitals, and telehealth programs—many of which rely on HHS grants to reach underserved populations. The elimination of key funding for CDC public health initiatives and the Affordable Care Act's Prevention and Public Health Fund will hit rural counties the hardest, where high rates of chronic illness and limited access to care demand more investment, not less. The proposed budget does include some provocative titles—like the $500 million 'Make America Healthy Again' initiative—but these piecemeal programs offer a fraction of the scale needed to address national health challenges. Only $119 million is allocated for a Prevention Innovation program, while over $1.5 billion in HIV prevention programs are being slashed. North Carolina, which continues to fight high rates of HIV, will feel the consequences firsthand. Innovation is not just about profit or prestige—it's about people. Patients waiting for a clinical trial in Charlotte, veterans accessing mental health support through telehealth in western North Carolina, and community health workers in rural eastern North Carolina trying to curb diabetes rates. These are the real faces behind the numbers. Congress now holds the line. It must reject this dangerous budget, reinvest in science and health equity, and protect the institutions that allow America—and North Carolina—not just to respond to crises, but prevent them. Innovation cannot survive on slogans. It thrives on sustained, strategic, and science-driven investment. Anything less is not just shortsighted—it's reckless.

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