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

Boston Globe

19-03-2025

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.