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    Sunday, June 23, 2024

    Surgery enables Pawcatuck woman to stand for the first time

    Physical Therapist Susan Steady, left, and Taylor Bargnesi support Arianna Howard as she stands at a desk during a physical therapy appointment at the Pequot Health Center in Groton Wednesday, Feb. 1, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Taylor Bargnesi holds Arianna Howard in the water during a swimming class with the Special Olympics of Groton at UConn Avery Point Saturday, Feb. 4, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Physical Therapist Susan Steady encourages Arianna Howard to kick a ball as she holds hands with Taylor Bargnesi during a physical therapy appointment at the Pequot Health Center in Groton Wednesday, Feb. 1, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Taylor Bargnesi helps Arianna Howard into the pool during a swimming class with the Special Olympics of Groton at UConn Avery Point Saturday, Feb. 4, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Arianna Howard, center, gives a sign that she his feeling OK to Taylor Bargnesi, right, and Physical Therapist Susan Steady, left, during a physical therapy appointment at the Pequot Health Center in Groton Wednesday, Feb. 1, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Taylor Bargnesi holds Arianna Howard as they greet Special Olympics of Groton Head Coach Ashley Farnham during a swimming class at UConn Avery Point Saturday, Feb. 4, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Physical Therapist Susan Steady, left, rubs Arianna Howard’s back as she stands at a desk with Taylor Bargnesi looking on during a physical therapy appointment at the Pequot Health Center in Groton Wednesday, Feb. 1, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Arianna Howard works on arm mobility by pushing a bar during a physical therapy appointment at the Pequot Health Center in Groton Wednesday, February 1, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Taylor Bargnesi guides Arianna Howard through the water during a swimming class with the Special Olympics of Groton at UConn Avery Point Saturday, February 4, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    Physical Therapist Susan Steady, left, and Taylor Bargnesi, right, work with Arianna Howard on straightening her legs during a physical therapy appointment at the Pequot Health Center in Groton Wednesday, February 1, 2023. Howard, who has spastic quadriplegic cerebral palsy with an intellectual disability, recently had surgery that may allow her to stand and potentially walk. (Sarah Gordon/The Day)
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    At the Pequot Health Center in Groton, Arianna Howard pushed herself up to stand, leaning her arms for support on a table.

    “Push, push, push!” encouraged her physical therapist Susan Steady, who was spotting her.

    “Look at you standing!” said Howard’s guardian and best friend, Taylor Bargnesi, her voice, brimming with enthusiasm and pride.

    Howard beamed.

    Howard, 21, of Pawcatuck, who has cerebral palsy and has been in a wheelchair for her whole life, had surgery on Dec. 18 to straighten her legs and help her stand. Her family and surgeon hope her surgery will contribute to helping better understand the surgeries possible for adults with Cerebral Palsy.

    “Everyone’s so proud of you,” Bargnesi told Howard at the end of the physical therapy appointment on Feb. 1. “They’re like, ‘She’s the coolest girl I know.’ ”

    Bargnesi, 24, Howard’s longtime best friend, became Howard’s guardian in 2021. They shared their story with The Day last year of how the two met while in elementary school in Norwich and became inseparable.

    Bargnesi is both best friend and caretaker to Howard, who has spastic quadriplegic cerebral palsy with a mild intellectual disability and uses a wheelchair. The two enjoy listening to music, reading books together, being outdoors, going to the beach, church, family dinners, and bowling ― and essentially the activities any family likes doing.

    Bargnesi searched for a surgeon who would perform a surgery to help Howard learn how to stand, pivot, and transfer herself, such as from her wheelchair to her bed, and give her more independence.

    “Ari should be allowed every single opportunity in the world that I am allowed,” Bargnesi said.

    Bargnesi struggled, and was turned away in her efforts to find someone who would perform the surgery. Then she found a video online of Dr. David Frumberg, an orthopedic surgeon at Yale New Haven Hospital, talking about how he loves helping people, from infants to seniors.

    Bargnesi called and made an appointment, but was anxious that she was only getting her hopes up. When she went to the appointment, Dr. Frumberg was on board.

    Howard had the surgery for distal femur extension osteotomy, patellar advancement, hamstring lengthening, and bunion fusion on Dec. 18.

    Getting stronger and stronger

    “She stood up the first day after surgery, and from there, it’s just been she’s getting stronger and stronger, and it’s been amazing to watch the recovery process,” said Dr. Frumberg, who is director of the Cerebral Palsy Program at Yale New Haven Hospital and Assistant Professor of Orthopaedics and Rehabilitation at Yale School of Medicine.

    At Howard’s appointment with Dr. Frumberg on Jan. 27, she got the braces off her legs, six weeks after the surgery to straighten her legs and give her the ability to stand. She’ll wear knee immobilizers to sleep for about six more weeks or when she works on standing during physical therapy.

    Howard is learning what it feels like to stand, Bargnesi said. She can already bear weight, and she’s working on building skills to be able to stand on her own. Bargnesi said it will be a long process, but it’s well worth it.

    Steady said Howard is making amazing progress during physical therapy.

    “It’s a lot of re-learning and learning, but she works so hard every time she comes,” said Steady.

    Dr. Frumberg explained that, before surgery, Howard’s knees were stuck in a flexed position, which made it hard for her to stand. In surgery, he essentially straightened her knees by cutting her bones, spinning them upwards, and installing an implant ― used mainly for adults ― that allowed her to bear weight immediately. She was able to start rehabilitation right away, as opposed to having to wait until her bones healed.

    “A lot of times we worry about doing surgery in adults because maybe they’re not going to recover as fast, or maybe they’re not going to be able to rehab as well,” he said. But with Howard ready to go from day one, even a surgery as extensive as this, becomes a little easier to recover from.

    The operation is typically considered pediatric, but he applied it to Howard’s case, and to another patient, using more of an adult implant. While the surgery is done frequently for children and late teens, for adults, it’s uncertain what the outcome is going to be, because there hasn’t been much research in surgeries and outcomes for adults with cerebral palsy and other neurodevelopmental disorders.

    “No one really does this work for adults with neurodevelopmental disabilities or disorders, and so it’s hard to know what the right thing to do is because there hasn’t been research about it. So we have to just follow our heart and try to understand what our goals are,” Dr. Frumberg added.

    Dr. Frumberg said Howard’s goals were pretty clear: being able to stand up to move herself for daily activities ―such as moving herself onto the toilet, or from her chair onto her bed ― and to prevent the people who take care of her everyday from hurting their backs.

    “We had pretty clear goals, and I mean, look at her. You knew she was going to achieve it,” he said.

    Howard is going to physical therapy to meet her goals. Bargnesi is working with her every day to keep up her progress.

    “Standing is definitely our main goal,” Dr. Frumberg said. “Taking some steps would be a nice bonus, but it’ll be up to her family to be able to support her body while she takes steps, but I think she can do it.”

    He said it would take maybe six months for Howard to be able to stand without braces and maintain the stamina to do it for longer than a minute.

    A surgery that could help other people

    Frumberg hopes Howard’s experience will help others.

    “We don’t really have good long-term research, so we’re hoping that this is the start of that, so Arianna will be contributing to the future of many other folks with similar disorders,” he said.

    “A lot of times people with neurodevelopmental disorders have barriers when they see doctors and so Arianna was definitely one of those people who maybe there was a barrier placed in front of her to being able to achieve her goals because it required surgery, and it’s not the fault of surgeons,” he said. “It’s just that there hasn’t been research and there hasn’t been a workforce willing to do it so I would say the more people we have that are inspired to care for people like Arianna and help them meet their goals, that’ll be important for the long term.”

    He said knowing that there are options ― even though it may take a surgery to get there ― and knowing that there are people willing to help, is the most important thing.

    Dr. Frumberg said there is not a huge number of orthopedic surgeons who care for adults with cerebral palsy, and so it can be difficult to know what the success rate for a surgery will be or what the research indicates.

    “The more information we have, the better we can make the future, and I think it’ll be better for all, and then I think ideally there are 600 surgeons that are willing to do it and people really don’t have that barrier to access,” he said.

    Gaining independence

    Bargnesi said she is speechless and so happy for Howard and knows she could become more independent. Howard also recently graduated from the Ocean Avenue LEARNing Academy in New London and started a state Department of Developmental Services day program through The Light House, a nonprofit focused on services and support for people with disabilities.

    Bargnesi said when Howard, stood up straight in her stander, a type of equipment to help her stand, after surgery, she was smiling ear to ear and was so proud of herself.

    “I think it’s amazing,” said Bargnesi’s mother, Melissa Neill. “I can’t wait to see how much Ari will be able to do.”

    While Howard has had to be lifted, she now will be able to help when she goes from her bed to her wheelchair or from her wheelchair to a regular chair. She will be able to decide that she wants to get out of her chair and help get out of her chair, with some assistance, while currently Bargnesi has to lift her completely.

    “It really just changes her quality of life, because there’s just so much that she’s going to be able to do as far as that independence, which I’m trying to always give her,” Bargnesi said.

    The surgery also means that Howard’s legs, which have been tight and contracted, will be able to relax and not feel uncomfortable, Bargnesi explained.

    Howard swims and plays adaptive sports through Special Olympics in Pawcatuck. Bargnesi envisions Howard will be able to stand up one day, with assistance, and throw a bocce ball or kick a soccer ball. Bargnesi is also confident that Howard will take steps one day.

    Bargnesi said the surgery is life-changing, and the possibilities are “endless.”

    “It’s going to open up a whole new life for her as far as independence,” Bargnesi said.

    k.drelich@theday.com

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