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Maureen Ryan is a Registered Nurse who was working at Newton Wellesley Hospital and living in Brighton, Massachusetts until November 2018 when at 26 years old, she suffered complications after multiple cardiac and aortic surgeries. She is paralyzed from the waist down and dependent on a ventilator to breathe. She just spent her second Christmas in the hospital.
Maureen has lived with Loweys-Dietz Syndrome since birth. She has endured many health problems and surgeries throughout her life yet steadfastly refused to allow her condition to define her, rising to every challenge with fierce determination hidden behind an ever present smile.
After having part of her aorta replaced in 2007, she finished high school and went on to college where she acquired enough credits to skip her last semester and graduate with a degree in management, got a job and moved to Cambridge. When asked why she did not want to stay and enjoy her last semester of college, she said: “I just want to start my life!”
She worked at Brigham and Women’s Hospital Division of Infectious Disease from 2014 until 2016 when she decided to become a nurse. She left Brigham and entered the Accelerated Bachelor of Science in Nursing Program at MGH Institute of Health Professions in January 2016 while also working nights as a unit coordinator on an orthopedic floor at Newton Wellesley Hospital.
Maureen always knew that she would need further surgical interventions to preserve the remainder of her aorta but believed she would not need any new surgeries for a number of years. Right before her final nursing exams she learned that her condition was worsening and it demanded a surgical intervention within months.
Undaunted, she had a plan: “Pass my finals. Graduate. Pass my Boards. Take two weeks to enjoy summer a little. Have the surgery. Get a job.” Unfortunately, her two week break was thwarted by a bad fall while awaiting surgery. After surgeries in August and October 2017, a cascade of events left her helpless and dependent. The unfairness of it all, for someone who long before she decided to become a nurse was dedicated to helping people and trying to make their lives better, was overwhelming. At that point, some professionals discouraged her from pursuing a career in nursing. Once again undaunted, she had a plan. Through long hours of physical therapy, she clawed her way back to health over six months of recovery and finally achieved her dream of working as a registered nurse and moved to a new apartment.
After working as a nurse for only six months, she learned she would again need surgery to prevent further dissection of her aorta. She delayed the surgery for as long as she could but in November 2018, she had more surgery with the hope of returning to work in a couple of months. A new series of complications arose after several surgeries, leaving Maureen where she is today, over a year later, paralyzed and living on a ventilator In Spaulding Hospital’s Cambridge Long Term Acute Care Unit.
Maureen’s goal is to be able to leave Spaulding and live at her parent’s home in Framingham and begin using a powered wheelchair for mobility. For every hospitalization since she was a child, her parents, Colleen and Kevin, have coordinated to spend most of every day with her, either living at a hotel next to the hospital for months or staying in shifts, commuting from Framingham to Boston or Cambridge. Kevin’s law practice has been suspended because of the need to respond to Maureen’s ever changing medical issues.
Colleen continues to work four days a week as a nurse educator in the ICU at Newton Wellesley Hospital and exhausted all of her earned time as well as family leave (FMLA) in 2019. She needs to keep working to provide a source of income and maintain health insurance for herself and Kevin.
So far, insurance has covered most of Maureen’s medical expenses. If she returns home with her parents, she will require around the clock care, including overnight nurses and patient care assistants during the day. Colleen and Kevin have been renovating their home inside and out, repurposing their living room for Maureen, installing a ramp system and upgraded emergency electrical capacity to support the equipment Maureen will need to live at home. They face enormous and continuing expenses to keep Maureen safely at home that will not be covered by insurance and at some point hope to purchase a specialty wheel chair lift van that will also accommodate and support equipment she needs when away from home.
Always fiercely independent and resilient, she has never wasted a moment of her life and pursued her dreams with passion…and always a plan. Once again, she needs to amend her plan but this time, she can’t do it all on her own….
Maureen has lived with Loweys-Dietz Syndrome since birth. She has endured many health problems and surgeries throughout her life yet steadfastly refused to allow her condition to define her, rising to every challenge with fierce determination hidden behind an ever present smile.
After having part of her aorta replaced in 2007, she finished high school and went on to college where she acquired enough credits to skip her last semester and graduate with a degree in management, got a job and moved to Cambridge. When asked why she did not want to stay and enjoy her last semester of college, she said: “I just want to start my life!”
She worked at Brigham and Women’s Hospital Division of Infectious Disease from 2014 until 2016 when she decided to become a nurse. She left Brigham and entered the Accelerated Bachelor of Science in Nursing Program at MGH Institute of Health Professions in January 2016 while also working nights as a unit coordinator on an orthopedic floor at Newton Wellesley Hospital.
Maureen always knew that she would need further surgical interventions to preserve the remainder of her aorta but believed she would not need any new surgeries for a number of years. Right before her final nursing exams she learned that her condition was worsening and it demanded a surgical intervention within months.
Undaunted, she had a plan: “Pass my finals. Graduate. Pass my Boards. Take two weeks to enjoy summer a little. Have the surgery. Get a job.” Unfortunately, her two week break was thwarted by a bad fall while awaiting surgery. After surgeries in August and October 2017, a cascade of events left her helpless and dependent. The unfairness of it all, for someone who long before she decided to become a nurse was dedicated to helping people and trying to make their lives better, was overwhelming. At that point, some professionals discouraged her from pursuing a career in nursing. Once again undaunted, she had a plan. Through long hours of physical therapy, she clawed her way back to health over six months of recovery and finally achieved her dream of working as a registered nurse and moved to a new apartment.
After working as a nurse for only six months, she learned she would again need surgery to prevent further dissection of her aorta. She delayed the surgery for as long as she could but in November 2018, she had more surgery with the hope of returning to work in a couple of months. A new series of complications arose after several surgeries, leaving Maureen where she is today, over a year later, paralyzed and living on a ventilator In Spaulding Hospital’s Cambridge Long Term Acute Care Unit.
Maureen’s goal is to be able to leave Spaulding and live at her parent’s home in Framingham and begin using a powered wheelchair for mobility. For every hospitalization since she was a child, her parents, Colleen and Kevin, have coordinated to spend most of every day with her, either living at a hotel next to the hospital for months or staying in shifts, commuting from Framingham to Boston or Cambridge. Kevin’s law practice has been suspended because of the need to respond to Maureen’s ever changing medical issues.
Colleen continues to work four days a week as a nurse educator in the ICU at Newton Wellesley Hospital and exhausted all of her earned time as well as family leave (FMLA) in 2019. She needs to keep working to provide a source of income and maintain health insurance for herself and Kevin.
So far, insurance has covered most of Maureen’s medical expenses. If she returns home with her parents, she will require around the clock care, including overnight nurses and patient care assistants during the day. Colleen and Kevin have been renovating their home inside and out, repurposing their living room for Maureen, installing a ramp system and upgraded emergency electrical capacity to support the equipment Maureen will need to live at home. They face enormous and continuing expenses to keep Maureen safely at home that will not be covered by insurance and at some point hope to purchase a specialty wheel chair lift van that will also accommodate and support equipment she needs when away from home.
Always fiercely independent and resilient, she has never wasted a moment of her life and pursued her dreams with passion…and always a plan. Once again, she needs to amend her plan but this time, she can’t do it all on her own….