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Mother fights to stay with disabled daughter through COVID-19 hospitalization

Millie Coombs says her 36-year-old daughter Nikki Coombs is severely disabled and non-verbal. She says she can't communicate with staff to advocate for herself.

WELLS, Maine — Amid the COVID-19 pandemic, hospitals have limited or disallowed visitors. It’s a logical solution to limiting the spread of the virus within hospitals and protect patients and our first responders. However, some patients who are either elderly or disabled can’t speak on their own. They oftentimes depend on family to speak on their behalf. This dilemma has led to a host of complaints across the country, including here in Maine.

36-year-old Nikki Coombs has faced a multitude of health problems since she was 5 years old. She has battled Hemolytic Uremic Syndrome, anoxic brain injury, insulin-dependent diabetes, seizures, a kidney transplant, severe kidney disease, and a double-leg transplant. 

Her mother Millie says while Nikki is chronologically 36 years old, she is nowhere near a normal 36-year-old intellectually, emotionally, or mentally.

Millie Coombs says, “Nikki is a happy child and she brings so much joy to all who know her and love her. Nikki loves Disney movies, Winnie the Pooh and friends, painting and reading children’s books.”

Nikki is non-verbal. Her mother or her father have been at her side constantly throughout her numerous hospital stays throughout her life. Her parents communicate with health professionals on her behalf and advocate for their daughter. Her mother says, “Due to her extensive medical needs, limited speech, and inability to call for help or use call light, we never leave Nikki alone in the hospital.”

However, since Wednesday, November 25, Nikki has largely been on her own at Maine Medical Center in Portland. 

The hospital allowed for Millie to visit her daughter briefly on the day this story aired, Tuesday, December 8. However, Millie says hospital officials told her it would not be a routine privilege, and that they could not make an exception for allowing her to stay in the hospital with her daughter.

On her own, Nikki can’t make informed medical decisions and risks not receiving the proper care. Millie fears long-lasting harm.

Millie Coombs says, “Nikki can’t tell you her name or her date of birth...Nikki can’t even ring a call bell...she would need my husband or me to interpret for her, or the staff would not understand her needs. It’s totally unsafe for Nikki to be in a hospital room without one of us being able to interpret for her.” 

"People who don't know her aren't going to know what she's saying. They won't have any clue what she's saying because of the way she says things."

According to MMC's most recent visitation policy, there are a few exceptions to the bar of visitors and escorts. This includes patients requiring special assistance. 

The policy reads, "Patients in any care setting who need help — such as with mobility or communications with the care team about their medical history or care — may be assisted by an adult escort to provide the needed assistance or support. Such necessity will be determined by the care team."

However, the policy implies that no visitors are permitted in the case of COVID-19 patients with very limited exceptions. It says, "Patients in isolation for COVID-19 infection or being evaluated for COVID-19 infection [are premitted] no visitors except for end-of-life."

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Millie Coombs is constantly checking in on her daughter, sometimes five or six times a day, but says she's still sick with worry. Now, she's turning to legal action in order to be with her daughter, working with a lawyer from Disability Rights Maine.

"I don't wanna create any bad feelings with the hospital because they're taking care of my daughter, but I just need to be with her."

To be with her, to be her voice, and offer the kind of care only a mother can. 

"I'd say, 'Nikki...mommy's with you, I'm always with you, and I love you and you're going to get better and come home.'"

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Maine Medical Center issued the following statement in response to this story: 

Maine Medical Center has put in place restrictions on visitation to its hospital and outpatient locations in order to protect care team members, patients and visitors from the spread of COVID-19. These restrictions follow CDC and CMS guidance and are in line with those of similar health care organizations.

MMC understands that families and visitors play an important role in care planning and healing and has guidelines in place that allow for limited exceptions when clinically appropriate and safe for care team members, visitors and patients. These exceptions include situations involving pediatric patients, end of life events and patients with disabilities or other limitations for whom a visitor can provide needed assistance or support. Visitors should consult visitation guidelines on the MaineHealth website and discuss exception criteria with care team members.

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