There is life after diagnosis

Talitha Wilson cried for two weeks straight after her child was diagnosed with Down syndrome.

This is a genetic condition where a person is born with an extra copy of chromosome 21. This means that they have 47 chromosomes instead of 46, which affects how their brain and body develop, causing intellectual or developmental disabilities.

A 20-year-old young mother at the time, Wilson vividly remembers the insensitive manner in which she received the news.

She had brought her son to a local health centre for his six-week vaccinations, but the nurse hesitated when she saw him.

“She told me, ‘Mother, yuh know that yuh child had mongol?’ She said, ‘Am not going to give him any vaccination because I don’t know how to treat people like this’,” Wilson recalled.

The term ‘mongol’ generally refers to a person from Mongolia, but it has also been used as a derogatory label for a person with Down syndrome, as well as an insult for someone considered stupid.

Wilson shared that, soon after her son’s birth, a nurse inquired about his race, leaving her confused.

A subsequent visit to another health centre finally provided her with insights into her son’s condition.

Wilson said she placed her son, Di-Mario Humphrey, into early stimulation, and he was able to attend a “normal” basic school. He then moved on to the Shortwood Special Education Department before completing his education at the Randolph Lopez School of Hope in Kingston. Humphrey also completed a customer service course at the HEART/NSTA Trust, and secured summer jobs at bookstores in Kingston.

“What I actually did as a parent, I did not see him with a disability. I taught him the stuff that a ‘normal’ child would learn; wash, cook, clean, iron everything. I let him enjoy life as a ‘normal’ person,” she said.

Dr Charmaine Scott, chairman of the Jamaica Down Syndrome Foundation (JDSF), disclosed that three to four children are born in Jamaica each month with Down syndrome, 70 per cent of whom have heart defects.

The JDSF, which was established in 2007 to provide holistic support to families of children with Down syndrome, currently has more than 650 families registered.

However, she noted that some families who can take care of the challenges on their own opt not to register with the foundation.

She stated, too, that people in rural Jamaica often find it difficult to participate in the activities of the foundation, sharing that outreach to rural parishes has been limited by budgetary and staff constraints.

PSYCHOSOCIAL SUPPORT

Scott emphasised the crucial role of psychosocial support for families of children with Down syndrome, a service the foundation is dedicated to providing.

She noted that this aligns with the theme for World Down Syndrome Day, celebrated today under the theme ‘Improve Our Support Systems’. This highlights the importance of offering tailored support that empowers individuals with Down syndrome, granting them choice, control, and dignity, while also underscoring the need to support their families.

Scott, who is one of the Caribbean’s leading paediatric cardiologists, shared that the JDSF also does fundraising to help families with grants for services such as health screening and specialist visits, educational screening, and occupational therapy.

She said it is crucial that health and education interventions for the children with Down syndrome are done at an early stage, but acknowledged that there are hindrances to this.

“This sounds very straightforward, but it’s a challenge because of the lack of resources, and the need far outstretched what we have,” she said.

Speech therapy, an essential service for children with Down syndrome, is primarily available in the private sector and is often prohibitively expensive. Moreover, the developmental assessments needed before a child can be enrolled in school are scarce in the public sector, forcing parents to turn to private institutions where each session can cost as much as $60,000.

And, while the government-provided centre for early stimulation is “excellent”, Scott noted that the needs outweigh its capacity.

“Only a few can access and, by the time they do that, sometimes it’s a bit late for the intervention to be fully effective,” she said.

Further, the financial burden of health and developmental care for children with Down syndrome can be overwhelming for parents, she stated.

“Lots of things happen after they (mothers) get the news. They fall apart, sometimes their partners leave them, sometimes they feel suicidal and actually carry that through. Sometimes it’s really devastating,” she said.

Wilson, whose son is now 24 years old, recalls several times over the years when she felt weighed down by his care needs.

“We may be doing assignments and I am trying my best how I know how to do it and he doesn’t understand, and I am trying to go to the lowest level I can. So stuff like that, over time, you just get emotional,” she said.

Fortunately, a strong support system from her community and family helped her persevere, providing her with the walls with which she tries to shield her son from any discrimination he may face, especially now as he tries to secure a job.

“They need to do more for persons to understand persons with disabilities ... . It’s like they are left out of every single thing that is happening in this country,” she said.

While recognising that a stigma against individuals with Down syndrome persists, Scott noted that the situation in Jamaica is improving as more people become educated about the condition.

“As the world is now looking with different eyes at persons with Down syndrome, more will come forward and say I have a child with Down syndrome, and the diagnosis would be picked up and the stigma isn’t as great as it used to be,” she said.

She stressed the need for a multi-government agency approach to buttress the efforts of foundations like the JDSF that support people with disabilities.

“Until we have better plan as a country to deal with it, this is our little way of assisting with a bigger picture,” she said.

sashana.small@gleanerjm.com