Vol 24: The Sum of Many
A common saying, widely attributed to ancient African cultures, asserts that it takes a village to raise a child. This responsibility is made infinitely more onerous when just a single parent is involved in the process. Recognizing this, author Ann Douglas added that it also takes a village to support that child’s parent.
Unfortunately, too many children in The Bahamas do not have the benefit of the ‘village’ experience. For others, especially those facing physical or emotional challenges, even with both parents at home, the task is a daily challenge rife with peaks and valleys.
The six-year-old patient featured in today’s report is an exceptional example of how a community of loved ones can band together and make miracles happen. Everything she has become can be attributed to the love and support of her mother, grandparents, aunt, uncle, teachers, doctors, therapists and a relentlessly close network of friends and family.
Her mother became pregnant with her at the age of 33. In the second trimester of her pregnancy, she was hospitalized with a urinary tract infection and soon thereafter she began experiencing rapid and severe heart palpitations. At times the throbbing became so intense she thought her chest would explode. She’d panic and gasp uncontrollably, afraid she couldn’t catch the next breath. That dramatic reaction led to a chronic cough, causing her to take time off from work. She was placed on a nebulizer twice a day to control her symptoms
At 36 weeks she delivered her first and only child; a daughter weighing five pounds. Despite the baby’s small size, initially everything appeared normal. Then at age two months, she noticed that her daughter while laying on her back would constantly lean to the right. After that she began to analyze her more closely and soon noted that when her daughter cried, the right side didn’t move in proportion to her left contralateral side. The deficiency was so subtle that even her pediatrician didn’t notice or appreciate what was happening.
At age four months, her mother took her back to her pediatrician, showing the physician how her daughter’s right hand always remained clenched. They both knew diagnostic testing would be necessary but there was a justifiable reluctance by the doctor to administer the required anesthesia for an MRI until she turned six months. By then the entire right-side deficit, including her tone and grip, was much more pronounced. The baby was unable to sit-up without falling over and results of the MRI revealed that she had a left temporo-parietal porencephalic cyst of the brain.
At that point she was referred to a pediatric neurologist at the world-renowned Nicklaus Children’s Hospital in Miami, Florida. Given its close proximity to The Bahamas and the fact that it was named after its founder Jack Nicklaus, the golf icon who designed the course at Baha Mar, going there gave her an admittedly strange sense of comfort and familiarity. There, her daughter was diagnosed with congenital porencephaly and right-sided spastic hemiparesis. In layman’s terms, this baby had suffered a stroke while in the womb and developed a brain cyst that has resulted in the entire right side of her body being completely paralyzed.
It was a shocking blow to her entire family but one that finally justified her mother’s unwavering and months-long desperate search for answers. She had a right to be concerned. Her daughter had an extremely rare condition and from then forward that protective modus operandi instilled in every mother went into overdrive.
She enrolled her daughter in an intense and long-term physical therapy regimen but the first three years were quite challenging to say the least. Her daughter was prone to suffer with seizures and she had urinary problems because of her weakened bladder. There was a constant fear that she’d need to have a catheter inserted, which was distressing because of her increased risk of developing bladder infections. Fortunately, over the years, she began to reach several developmental milestones and with the help of her amazing 71-year-old Bahamian physical therapist and her 36-year-old occupational therapist, she learned how to walk with the use of an upper and lower extremity brace.
Now age six, her daughter is in grade one at a private school with a grade point average of 3.9. Her grandmother drops her to school every day and picks her back up, which she refers to as their special quality time. She also has her aunt and uncle who love her unconditionally and her teachers have become an extended part of her family.
Because she attends school and is now able to walk with the use of a brace, she was denied financial assistance by Social Services. Even if she were eligible, she would only be entitled to $120 per month, which couldn’t cover the cost of one therapy session.
Her mother specifically wanted this emphasized about her daughter’s story in hopes that the criteria will someday change and make life easier for other young mothers facing similar circumstances. Fortunately, her daughter is on her insurance plan and her family has also repeatedly helped to defray many of her financial constraints.
She and her mother share a special bond. Every night, from this patient was two-years-old, they’d talk about their day. She would tell her daughter that she’s beautiful and smart and she encouraged her to be strong, reinforcing the mantra that a weak mind yields a weak body. Now when adults stare at her, rather than holding her head down and crying, she yells back without verbal provocation that she had a stroke but she’s still smart. It was proof that these nightly positive affirmations were working.
Her mom also wants her daughter to be as independent as possible, encouraging her to attend birthday parties and to use the monkey bar at the neighborhood playground. She has a scooter, rides a bike with assistance and she is adamant that her daughter participates in physical education at school.
Unfortunately, the patient suffered a setback when she contracted Covid-19 last year. Her vision was temporarily distorted. Also, because there was delay in her being able to have therapy, she developed rigid lower extremity contractures and her wrist drop and lack of grip intensified. But over the years, her mother has learned that despite all the challenges, her daughter, who is scheduled to have surgery next month to address her muscle contractures, is a survivor. She is excited about the surgery and is filled with the hope that she’ll someday be able to walk without her brace.
Today she wants to be a preacher, a scientist and a rapper. Years after it was first stated, the old African proverb that no child grows up in a single home remains incontrovertibly true.
She is the sum of the many people in her life and the greatest testament of their love. She’s funny, extraordinarily lovable and with each passing year and a strong community at her back, she becomes infinitely more poised to change the world. Ask her what she thinks about her condition and she’ll tell you honestly and emphatically that she knows God is using her to show the entire world that miracles are possible.
This is The KDK Report.
