How family life goes on after Down syndrome

A son is born
Nothing could have prepared Laura and Brett Torrey for the unexpected news after the birth of their second son, Kyle.

The delivery was long and difficult as it had been with Matthew, but the moment Kyle took his first breath the pain disappeared as the tired but happy parents welcomed their new son into the world. Everything seemed normal, just like the first time. The baby had 10 fingers, 10 toes; the umbilical cord was cut; and he was cleaned before being whisked away to the nursery. Laura and Brett were both exhausted and sleep seemed a welcome relief after a long night’s work. They would need their rest, however, for eight hours later their lives would take a different path than they had planned.

Getting life-changing news 

As Laura rested alone in her room, the family pediatrician came in to report that Kyle exhibited characteristics of Down syndrome, a genetic disorder that generally causes mild to moderate retardation, distinctive facial features and a higher risk of health issues. With that said, she walked out of the room leaving Laura in a state of shock that quickly turned to panic and despair.

“I had just woken up and the doctor told me that Kyle was in the neonatal unit on oxygen as a precaution. It was just very overwhelming,” said Laura. Brett agreed, “I was shocked that we didn’t know until 8 or 9 hours later, and that the doctor told her without me there and then just left Laura alone for a couple of hours. It was an emotional roller coaster for the first day or two.”

They later discovered that many other families learn of their newborn’s condition in a similar matter. Dr. Brian Skotko of Children’s Hospital in Boston, a respected advocate for children with Down syndrome, agrees with the Torreys that the medical community needs to be educated on how to better present this life-changing news to parents. Growing up with a sister with Down syndrome, he is particularly sensitive to the needs of families. His research reflects this as it has led to guidelines for doctors to present the medical facts in a positive and caring manner at a time families need this support. In a recent article in the Washington Post, Dr. Skotko said, “Every day my sister teaches me lots of life lessons – to laugh when others are mocking me, to keep on trying when obstacles are thrown my way,” he said. “If there were a world with fewer people with Down syndrome, I think the world would miss all these important lessons.”

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Testing is not 100% accurate

Laura had experienced a normal second pregnancy and was not considered in the high-risk category of mothers aged 35 years and older who often receive amniocentesis to check for chromosomal disorders. In addition to ultrasounds, she took the AFP (alphfetoprotein ) test for birth defects. “Initially when I was told that Kyle had Down syndrome, I was upset because I had that test, why didn’t it tell us that? Later we found out those tests are not 100% accurate and only pick up Down syndrome or birth defects if there is something like a heart defect, a condition many of these children have,” said Laura.

Because Kyle’s heart was healthy, he seemed like any other newborn, except that he began physical therapy when he was just three weeks old. Because babies with Down syndrome are physically weaker, therapists from the Birth-to-Three program came to the Torrey’s home several days a week to exercise his limbs to build up his strength. As he got older, speech and occupational therapy were added.

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“He walked a year after most babies would walk,” said Laura. “It just takes people with Down syndrome longer to do things. When you see a child that is your child’s age, you really see the difference, especially as he is getting older the difference seem bigger,” said Laura shaking her head, “but that’s the way it is.”

Looking back, Laura feels it was probably better that she didn’t know her baby’s condition when she was pregnant. She said her personality would have made her worry all the time. However, she feels knowing would have given her and Brett time to educate themselves which they were forced to do very quickly.

Family life goes on
Laura and Brett Torrey have managed through the years to take it all in stride. What some would consider a challenge, they accept as a normal part of their family life. Of course, they attend to Kyle’s special needs like medical checkups, continuing therapies and getting the right support services in school, but as a rule always treat him as a regular member of the family. “We try to do as little as possible to adjust from normalcy. He doesn’t have a lot of health issues so there are not a lot of things you have to think about like where you go or what you do,” said Brett.

Kyle is now 8 eight years old and will be entering third grade this year. He is in a regular classroom with a full-time aide who is there to provide support if he needs it. When asked about his aide, he replies “she’s funny”. Kyle loves to read – his favorite books are by Dr. Seuss. Two of his favorite classes are computer lab and music. Although he has a ukulele and loves to strum, he prefers to sing and just has to be asked before jumping up to entertain an audience.

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Getting the support you need
The Torreys themselves both have good parents and families who from the beginning have always given their full support. Laura’s mother, who is a nurse, was in the delivery room when Kyle was born, and both of her parents were there to help them through the difficult time when he was first diagnosed.

All the love, understanding and strong family ties have given Kyle the confidence and security to develop like every other child. He is growing up to be very social and loves to be around people. He is affectionately called the “mayor” of his school, and often surprises his parents when he says hello to the many people he knows as they travel around town. They both feel that Kyle’s winning personality – a real asset for people with Down syndrome – helps to make him accepted and loved by family and the community in which they live.

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Brett, as the Athletic Director of Cheshire Academy, a college preparatory school in Cheshire, Connecticut, is closely involved with helping young students (grades 6- 12) in their athletic and academic lives on a daily basis. During a recent Buddy Walk held at the school and sponsored by the National Down Syndrome Society, these same students gave back to him as hundreds walked around the campus to raise awareness and money for research. This year, it once again took place at Cheshire Academy on Sunday, October 11, 2009. The fundraiser drew hundreds of participants who happily walked around the campus, enjoyed the entertainment and donated $6,000 to help fund a cure.

Laura has chaired the event for three years which takes place in October, National Down syndrome Awareness Month. “Our first Buddy Walk was in Massachusetts when Kyle was very young. We were surrounded by so many other families with children with Down syndrome and realized we were not alone. It was very comforting,” remembered Laura. During a recent Buddy Walk, Kyle got to sing onstage with actor/singer, Chris Burke, age 43, who also has Down syndrome. He also autographed Kyle’s ukulele, one of his most favorite possessions. Chris is best known for the four years he spent playing Charles “Corky” Thatcher on the hit ABC-TV show “Life Goes On” and his recurring role as Taylor, the angel of faith on the hit CBS-TV show “Touched By An Angel”.

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Related genetic disorder leads to a healthier lifestyle
During a recent blood test, it was learned that Kyle had celiac disease, an allergy to gluten which is quite common to people with Down syndrome. Although no one exhibited symptoms, the entire family was tested because it is a genetic disorder. The results found that his older brother Matthew also has celiac disease, but Laura and Brett do not. One of the symptoms is moodiness which Laura said was impossible to pick up with a teenager. Because it poses some challenges to eating habits, they worry about how Kyle will handle that down the road, especially if he lives on his own.

“While not life-threatening, it can be very painful if you don’t follow a gluten-free diet,” stressed Laura. For Kyle, this means he must be very careful which can be a bit tricky for young children in school who like to share their food. For Laura and Brett this has resulted in a healthier diet for the entire family, although they admit to cheating once in a while.

The Torreys have learned that just loving your baby and living life to the fullest has been the best prescription for having a child with Down syndrome. Both agree that they lead a full and happy family life and having Kyle,

just like their first son Matthew, has brought them much joy. “Looking back eight years ago, we felt our world was coming to an end. Now, we couldn’t imagine life without him, “said Brett with a big smile.

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Books to read | Health

Count us in – A moving, personal story written by two young men with Down syndrome who will make you laugh, cry and never forget about their challenges, joys, families, and learning to live on their own.