Foundation to Help Children with Down's Syndrome Live Full and Rewarding Lives
For many persons, having a child is a joyous event, which calls for much celebration. However, when the child is born with a disorder such as Down's Syndrome (DS) it is often a very challenging time for the parents, and the support of family, friends, and loved ones, is critical.There are 148 persons living with DS in Jamaica and while the symptoms may vary from person to person, one thing is certain; these persons need guidance and support.One institution, the Jamaica Down's Syndrome Foundation Limited, has been established to do just that. The Foundation was created in January of this year, to among other things, provide information and support for children and their parents; empower affected children with lifestyle skills; and to establish a database of incidences of the condition in the island, to better equip health care professionals, educational institutions and related agencies to offer early intervention.
The foundation, which has the motto of 'Helping Jamaican Children with Down's Syndrome Live Full and Rewarding Lives,' is also working to educate and increase awareness about the condition among caregivers, teachers, medical professionals and the general public. In this way, they will be better able to face the different challenges and help the children live rich and rewarding lives.
Founder and Director of the Foundation, Dr. Charmaine Scott, who is a Paediatric Cardiologist Consultant at the Bustamante Hospital for Children, says that the aim is to ensure that adequate provisions are made for children with DS.
"Presently, no local group exists that focuses on children with DS and so our mission is to build public awareness, promote acceptance, connect families and build bridges to access existing institutional organisations and find ways for them to work and empower children," she says.
Additionally, she notes that the organisation intends to have regular parent group meetings, which will help families cope with the many issues such as the stigmatization that affects persons living with the condition.
Executive Director, Early Childhood Commission, Dr. Maureen Samms-Vaughn, points out that "as a society, we are failing to care for our children and for our special children more specifically."
She notes that persons with DS are often stigmatized by people, who find it difficult to accept and understand others who are different, and suggests that parents need to ensure that their children are sensitive to others with special needs, as this is the key to effecting change.
Named after John Langdon Down, the British doctor who first described the condition in 1866, DS or trisomy 21 is a genetic disorder caused by the presence of all or part of an extra 21st chromosome. In humans, each cell usually contains 23 pairs of chromosomes, one set from the mother and another set from the father, resulting in 46 pairs. However, in persons with DS, the 21st set (pair) of chromosomes has three instead of two, resulting in a total of 47 chromosomes.
The extra genetic material causes delays in the way a child develops and is often associated with some impairment of cognitive ability, physical growth and facial appearance. Down syndrome can be identified during pregnancy or at birth.
Women who give birth in their mid-thirties are more likely to have a child born with the DS. This is even more probable if the woman, or a close family member, already has a child with the condition.
"Any woman of childbearing age can have children with DS," Dr. Scott points out.
DS is often easily recognizable as children develop very distinct features associated with the disease. "Some of the features are flat nose, an extra fold around the eyes, a tongue which is protruding and the fingers and toes are short, and usually, instead of an N-shaped crease in the middle of the arm, there is just one single crease," she explains.
In addition, children with the disease tend to suffer from low muscle tone and loose joints. For infants, low muscle tone may contribute to sucking and feeding problems, as well as constipation and other digestive issues.
In toddlers and older children, there may be delays in speech and self-care skills like feeding, dressing, and potty training. At birth, children with the disease are usually of average size but as they get older, they tend to grow at a slower rate and remain smaller than their peers.
While some children with the disease have no other health problems, unfortunately, more than half the children born with DS will have heart disease, low thyroid hormone levels, gastrointestinal problems, and hearing and vision difficulties.
Pauline Lovindeer, a parent who has a child with DS, says that it was very difficult to deal with the fact that her daughter was born with the condition. "As a parent who at 39 was delivering her fourth child, and having delivered three presumably normal children with no history of abnormality in the family, being a nurse.why should I not have a normal child?" she asks rhetorically.
"At delivery, no one expects anything different from anything else, but the mother will notice that the child features are different and may say it's a Mongol," she points out.
Upon confirming that her child did in fact have DS, Mrs. Lovindeer admitted that she was distraught and it took her months to accept the reality. "For three months it was tears every time the baby went to the breast. I coped with it by going to church and having a period of prayer and fasting," she recalls.
Mrs. Lovindeer notes that parents with children affected by DS should just try to develop a coping mechanism and learn to accept and love their child. "Until you have accepted that child, there is nothing you can do to benefit that child, so the acceptance process may be long and it can be short. The shorter it is, the better it is for the child," she points out.