Celebrating end-of-life care in November

by Andrea Powell, HPCCR Marketing Manager

After October, which is awash in glorious shades of pink to recognize breast cancer, we come to the month of November, which most of us associate with the beginning of the holiday season. But that’s not all November has to offer. It’s also the month when we acknowledge an important (and often overlooked) service in our community: end-of-life care.

Brooklyn and her brother, Nathan

November is National Hospice Month. Hospice is comfort-oriented care for individuals at end of life (typically with a prognosis of six months or less) who are no longer seeking curative treatment. When we picture hospice patients, we often think of men and women who are our grandparents’ age. But this is not always the case. Brooklyn Cockerline is a perfect example.

On the day that I visited Brooklyn in her hometown of Lincolnton, she was a little under the weather. Thanks to congestion in her chest, breathing was a little more difficult than normal. But you couldn’t tell that she felt unwell at all. In fact, there was a beautiful, joyous smile on her face which became even more pronounced once she got settled in her mother’s lap for our interview.

Brooklyn just turned six years old in October. Typical six-year olds would be running around the house, talking non-stop and getting into everything. Unfortunately, Brooklyn can’t walk and she can’t talk. But she is a most wonderful blessing to her family and everyone who meets her.

Brooklyn was infected with congenital CMV (Congenital cytomegalovirus infection) while in the womb. Her mother, Alicia, contracted the infection while pregnant and unknowingly passed the virus onto her daughter. At the time, Alicia was working for a day care where CMV is a fairly common infection (between 50 and 80% of Americans will have had it by the time they are 40 years old). But for unborn children, the infection is much more serious. It keeps the baby’s brain from developing fully and leads to seizures, low birth weight, hearing loss, and vision impairment.

When she was seventeen weeks pregnant, Alicia learned that Brooklyn had developed congenital CMV. Despite outside pressure to terminate the pregnancy, Alicia and her husband refused to give up on their daughter; Brooklyn ultimately made her appearance at 35 weeks, about a month early.

Alicia and her husband did not know what to expect when Brooklyn was born. But she surprised them. Her birth weight was very normal and she was breathing on her own immediately.

That’s not to say, though, that Brooklyn and her family have had it easy. She’s had seizures throughout her short life which have caused untold damage to her brain and nervous system. She gets sick extremely easily; a seemingly simple cold can turn into an extended hospital stay if not treated immediately. Fortunately, Brooklyn has Dr. Benton in her corner, a wonderful physician who, two years ago, asked Brooklyn’s parents a simple but life-changing question, “Have you thought about hospice care?”

To any parent, it’s a completely terrifying question. But hospice care for children, for the most part, is different than hospice for adults. It is typically harder to know what path an illness might take in a child and prognosis is much more difficult. Dr. Benton was talking about Kids Path®, the pediatric program of Hospice & Palliative Care Charlotte Region (HPCCR) that provides care to children who are living with a serious illness or condition. Kids Path offers physical, emotional, and spiritual care with the goal of enhancing the quality of life for children and their families. For most of the children in the Kids Path program, their illness continues for much longer than the typical six months that is generally associated with hospice care.

In Brooklyn’s case, her Kids Path team consists of a physician, nurse, and social worker who work alongside Dr. Benton to care for her every need. She also has access to a chaplain, an in-home aide, and a volunteer whenever she or her family feel the need for those services.

Having such a diverse and well-rounded team at their disposal has created an almost house call-like situation for Brooklyn’s family. “All I have to do is make a phone call and someone comes out to check on Brooklyn,” explains Alicia. “We don’t have to take her into an office where she risks picking up other germs or infections.”

Brooklyn’s social worker helps her play with the iPad

Brooklyn’s nurse, Cyndi Jo, visits once a week to take assess her health, review her medications, collect labs, and discuss her plan of care. Her social worker, Candace, comes every other week to provide emotional support to the entire family and to interact with Brooklyn. She uses an iPad, along with other therapeutic interventions, to engage her young patient, and also includes fun activities like painting Brooklyn’s nails. And around every sixty days, Brooklyn has face-to-face visits with an HPCCR physician who recertifies her for hospice care, allowing her to stay in the Kids Path program. For almost two years, Brooklyn has been lovingly supported by this wonderful team, adding stability and comfort where it is most needed.

Brooklyn is an extremely happy and social child who loves watching her seven-year old brother play soccer and enjoys time with her cousins and other family members. She laughs spontaneously and is quite adept at communicating what she needs, even without words. “Since Brooklyn has become a Kids Path patient, she has had fewer seizures and her quality of life is much better,” Alicia says with relief.

Alicia and her husband do not know how much time they will be allowed with Brooklyn. She’s already had a few extremely frightening stays in the hospital over the past few years; one time in particular, Brooklyn became septic and was extremely close to death. But what they do know is that they are surrounded by a caring, compassionate Kids Path team whose goal is to keep Brooklyn healthy and happy for as long as possible.

Brooklyn and her family show us exactly why hospice care is celebrated and acknowledged in November. They remind us that life is meant to be lived with simple joy; that with the exceptional care that end-of-life services provide, anyone – young or old – with limited life expectancy can make every day count.

Kids Path® is a program of Hospice & Palliative Care Charlotte Region serving eleven counties in North and South Carolina. For more information, call 704.735.0100 or visit hpccr.org.

Explore posts in the same categories: advocacy, awareness, hospice, Hospice & Palliative Care Lincoln County, Kids Path, spiritual care

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