Melanie McLaughlin plays with her 4-year-old daughter Grace at the Medford Family Network.
In many ways, Medford preschooler Grace McLaughlin is a typical 4-year-old little girl. She loves dancing to Elmo songs, reading picture books and playing with her siblings’ toys.
Not so typical for a 4-year-old is the attention Grace garnered last month when she was propelled into the national spotlight in a TIME magazine article called “Early Decision,” centered around tough choices facing families like the McLaughlins when it comes to Down syndrome.
Grace is one of the 400,000 people living in the United States with Down syndrome. She has an extra chromosome, which alters her development and forces her to work harder to learn many things that most of us take for granted.
Before Grace was born, her parents, Terry and Melanie McLaughlin, had to make an unfathomably difficult decision, the same one that approximately 6,000 other U.S. families who receive pre-natal diagnoses of Down syndrome make each year.
A 2006 study by the U.S. Centers for Disease Control and Prevention estimated about one in every 691 babies are born with Down syndrome nationwide. The risk is higher, 1 in 100, for women 35 years or older who give birth.
Expecting her third child at the age of 40, Melanie was shopping at the Shaw’s Supermarket in 2007 when she received a phone call that would change her life.
After several days nervously awaiting the results of an amniocentesis, a slightly risky procedure that extracts and tests a mother’s amniotic fluid, the doctor told Melanie her baby would be born with Down syndrome.
“We were torn about what to do,” Melanie said. “We never had any experience with anyone who had a disability before. We were very afraid of what it would mean for our family and what it would mean for our marriage.”
The timing left the McLaughlins with only about a week to decide whether or not to continue the pregnancy.
Given her training as a documentary filmmaker, Melanie felt compelled to soak up as much research as possible in a short time. She wanted to meet not only with families who decided to have their babies, but also with those who chose to terminate pregnancies.
“Being a journalist, I felt like I wasn’t really doing my homework unless I found out what both sides of the story were,” said Melanie.
Melanie reached out to the Massachusetts Down Syndrome Congress, a non-profit group that promotes information, advocacy and networking for families and individuals living with Down syndrome. The MDSC has a First Call Program, which connects families dealing with a prenatal diagnosis to other families who experienced the same situation.
After much soul searching and painstaking research, the McLaughlins ultimately decided to bring Grace into the world. In doing so, however, they knew she would face serious challenges in her life.
“I didn’t think I was physically able to [terminate],” Melanie said of her decision, “but I also was not sure if I was emotionally ready to have her.”
In choosing to continue the pregnancy, the McLaughlins knew their child would eventually need open-heart surgery. For Grace, it came at the young age of 2 months.
“The open heart surgery fundamentally changed who I am,” said Melanie. “I remember thinking at the time, I wasn’t sure I wanted a baby with Down syndrome, but when I had to hand her over to the anesthesiologist, I remember begging the world to give me another chance.”
Grace made it out open-heart surgery OK and today looks like a healthy 4-year-old with a big smile and fiery red hair to match her Irish roots.
Melanie stressed while she knows the decision to have Grace was the right one for her family, she does not believe it will always the right decision for every family.
The 46-year-old mother now opens up her home to families facing the same situation she once faced. Melanie said a lot of those families ask the same questions she had as well, such as how having a child with Down syndrome has affected her marriage, her other children and what will happen after Grace’s parents are gone.
The McLaughlins are sharing their story at a time when the issue of prenatal Down syndrome detection has become a topic of national debate.
New testing procedures, which can detect Down syndrome as early as 10 weeks into pregnancy with a less invasive blood sample, have raised questions about the effects such new technology might have on the disabled community and on society at large.
Some have suggested the new testing methods could result in a purging of unborn babies diagnosed with the condition, which could reduce the number of Americans living with Down syndrome and lead to a decrease in funding and research for the condition.
“I don’t know whether it’s a good thing or a bad thing,” Melanie said of the new testing capabilities, “but I know it’s a the way science is going now, whether we like it or not.”
Melanie added while some might think they know what decision they would make, her own personal experience informs her that no one knows for sure until they actually find themselves in the situation.
“There are all these people who project about what they would do,” said Melanie. “I thought I would know what I would do in that situation, and I didn’t.”
Melanie swears that without Grace, she and her family would be very different people. The Medford mom pointed out how siblings of kids with Down syndrome tend to show higher levels of compassion on IQ tests than others.
Melanie sees that in her own children.
“Separating someone from the group because they’re different isn’t right,” said Ryleigh McLaughlin, Grace’s 10-year-old sister.
Ryleigh and 8-year-old Aiden show much affection toward their little sister, but get irked by kids at school who don’t understand Down syndrome and sometimes poke fun at Grace.
Aiden tried to explain to one kid that Grace is no different from them. She just has an extra chromosome, which makes it take a bit longer for her to pick up on things.
That approach doesn’t always work with 4 to 10 year olds, however. That’s when Aiden simply tells them to quit talking about his little sister.
“When she’s upset, she can’t use her words too well,” said Ryleigh. “We try to calm her down by rubbing her back or singing to her.”
Ryleigh pointed out how her little sister knows about 100 different signs, allowing her to communicate through sign language. Grace has been signing since she was 6 months old.
Forming words can be more difficult for her, but she speaks as well.
“She teaches other kids signs,” said Ryleigh. “She’s good at making friends.”
Melanie said with Grace, making progress takes a bit longer, but the rewards also feel much bigger when she learns a new word or masters a new skill.
“She looked up at me and said, ‘Love you, Mom,’” said McLaughlin. “That was huge to me. It’s huge when your 4-year-old tells you they love you anyway.”
Grace is currently enrolled in preschool at the Tufts Educational Daycare Center, where Medford Public Schools provides her with professionals to engage in speech, physical, occupational therapy sessions.
Despite the challenges faced by families raising children with Down syndrome, Melanie points out that without Grace in her life, she and other members of the family would be dramatically different people — more oblivious, less understanding and less compassionate.
“Now I know I made the right decision for us,” said Melanie. “I would have gone through life very blindly without her, oblivious to the lessons Grace has taught me.”