Mother forms support group for families with a child with Down’s syndrome
When Selina Edwards was 26 weeks pregnant she started to suspect something was wrong when doctors wanted to try amniocentesis for the fourth time.
Amniocentesis is a painful procedure where a needle is inserted into a pregnant woman’s abdomen to collect a sample of amniotic fluid to test for genetic abnormalities.
The test is usually recommended for women over 35, and Ms Edwards was 40.
On the fifth try, Ms Edwards’ baby was diagnosed with Down’s syndrome.
This meant the baby had an extra chromosome and would have physical and developmental challenges.
Doctors gave her the option to abort her baby, on the grounds that it could have severe health problems.
There are some estimates that as many as 80 percent of pregnant women with a baby diagnosed with Down’s syndrome will abort.
“Aborting my baby was no decision at all,” Ms Edwards said. Her son, Trudell, is now four years old and attends Lagoon Park Preschool in Somerset.
“For the most part, children with Down’s are a joy to have,” she said. “I could be having a bad day and Trudell will do something or say something to make me feel better.
“He always has a hug for me when I come in the door. The first thing he looks for is my iPad because I take it to work.
“He loves the drawing programme on it. At school he always has a hug for his teachers, the parents or other students. He will hug anyone.”
Now Ms Edwards has started an organisation, The Bermuda Down syndrome Organization/Support Group.
“I did feel alone when my son was born, only to discover that six months after I had Trudell, two more children were born with Down’s,” she said. “That made me even more want to establish an organisation and put the word out there.
“One of the children I know has gone overseas to live. It is frustrating when you can’t get [the type of help] you are looking for, so they opted to go overseas.
“I know of another kid who is in school overseas and doing really well.
“Why send our children overseas? Let’s try and get something up and running here?”
One thing she wants to do with her group is make sure other parents have all the medical resources and educational information they need.
Children born with Down’s syndrome can have a host of health issues, particularly related to the heart.
Trudell was diagnosed with patent ductus arteriosus (PDA), atrial septic defect (ASD) and ventricular septic defect (VSD). Basically, he had three holes in his heart when he was born.
“He was born on July 5, 2007, and he had PDA,” said Ms Edwards. “Then two weeks after he was born he started to become really ill.
“He was in and out of the hospital for the first six months of his life. That is when they sent us to Boston and they discovered he had VSD and ASD.
“The majority of children with Down’s have heart defects. He also had a bilateral hernia that was starting to grow around his intestines.
“He had surgery for that and then three days later had open heart surgery. That was in April 2008.
“He has been pretty good with some issues, but for the most part he is doing great.
“He is starting to talk now. He went to preschool with a vocabulary of 26 words and he is now up to maybe 150.”
When Trudell was born Ms Edwards had to look overseas for resources and information, because there was no one she knew of locally to reach out to.
She has now been to three Down’s syndrome conventions, and would like to organise awareness events in Bermuda in October during World Down’s syndrome Awareness Month.
“This organisation would be about awareness and handing out information to anyone who has family with Down’s syndrome and to let them know what they should be aware of and to give them information.
“For example, there are summer camps in the United States for children with Down’s syndrome.
“They don’t have to be stuck in one place. We do have some children in the middle and high schools.
“There are some colleges that do inclusion for children with Down’s and other special needs.”
Bermuda’s schools need to prepare for the ten children with Down’s born between 2005 and today, she added.
“The education system now needs to put something in place as they are reaching school age,” she said. “Really, the learning should start in preschool from six months old and going forward.”
For more information e-mail eselina27[AT]yahoo.com, telephone 500-6169 or visit the Bermuda Down syndrome Organization/Support Group Facebook page.
Normally, a fertilised egg has 23 pairs of chromosomes.
In most people with Down’s syndrome, there is an extra copy of Chromosome 21 (also called trisomy 21 because there are three copies of this chromosome instead of two), which changes the normal development of the body and the brain.
Symptoms of Down’s syndrome can range from mild to severe and usually include slower mental and physical development compared to people without the condition.
Intellectual and developmental disabilities (IDDs) limit cognitive abilities and adaptive behaviours conceptual, social, and practical skills people use to function in everyday lives.
Most people with Down’s syndrome have IQs that fall in the mild to moderate range of IDDs.
They may have delayed language development and slow motor development.
People with the syndrome suffer from congenital heart disease, hearing problems, intestinal problems such as blocked small bowel or oesophagus, coeliac disease, eye problems such as cataracts, thyroid dysfunctions and skeletal problems.
The chance of having a baby with Down’s syndrome increases as a woman gets older from about 1 in 1,250 for a woman who gets pregnant at age 25, to about 1 in 100 for a woman who gets pregnant at age 40.
Because the chances of having a baby with Down’s syndrome increase with the age of the mother, many healthcare providers recommend that women over 35 have prenatal testing for the condition.
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