According to this mother, having a child with Down Syndrome is a blessing, and a privilege, and should not be taken for granted
Every mother hopes her child will one day change the world, but Carien Harcombe knows it. This mother believes that anyone who crosses her daughter’s path is changed forever: “Jamie will change your outlook on life and give you meaning, a goal, a purpose.”
That’s quite a feat for a 6-month-old! But many people believe that children like Jamie are little angels sent down to earth, and that having the privilege of meeting them means being in the presence of greatness.
Little Jamie was born with a condition called Trisomy 21 (T21), a form of Down Syndrome (which Carien and her husband, Alan, call “Up Syndrome” because of Jamie’s constant high spirits). Down Syndrome is one of the most common genetic disorders in the world, affecting 1 in every 1,000 live births in developed countries and 1 in every 650 live births in developing countries such as South Africa.
Having T21 means that every cell in Jamie’s body has an extra chromosome, which causes mental retardation and delayed physical development. Many children with this condition also have to face additional medical complications. In Jamie’s case, it was a congenital heart defect.
The Harcombes were 6 months pregnant and on the last leg of a 2-week trip around the United States when they found out that something might be wrong with their unborn baby’s heart. They were scheduled for a check-up in Miami on the last day of their holiday when their obstetrician caught sight of a complication during the routine scan.
The couple were immediately referred to a team of paediatric cardiologists at another hospital for a more detailed scan, which showed that Jamie would be born with a congenital heart defect that is commonly associated with Down Syndrome.
When Carien and Alan left the hospital that day, their holiday came to an abrupt end as reality set in. “At this point I basically stopped reading the baby books,” says Carien. “I felt that it was not in our hands anymore. If I were going to have a special baby, I would just know what to do. No book can tell you how to prepare for what we were about to go through anyway.”
Jamie’s battle begins
Jamie was born one month premature with a large hole in the centre of her heart. She would need to undergo open-heart surgery within the next 4 months before heart failure set in. Without the proper surgical care, Jamie would not have lived to see her second birthday.
It was critical for her to gain as much weight as possible to be strong enough for surgery. But this turned out to be no easy feat. For the first 2 months Jamie struggled to put on weight. She was unable to suckle due to low muscle tone – an additional complication associated with Trisomy 21.
The frustrating reality
Alan and Carien were heartbroken. They felt unprepared and in the dark when it came to Jamie’s treatment. “It became really frustrating for us not to see results and not getting any answers,” says Carien. It wasn’t until a paediatric cardiologist eventually suggested inserting a feeding tube directly into Jamie’s stomach that this temporary problem was solved.
Jamie would need to undergo an additional surgery for the insertion, but she could go home with her parents until she was ready for open-heart surgery.
A scary development
But within a month Jamie showed signs of heart failure and was immediately admitted to Miami Children’s Hospital for the dreaded surgery. Carien carried her little girl to the operating theatre and handed her over to the operating room nurse and anaesthetist.
“It was the hardest thing I ever had to do in my life – saying goodbye to my little angel and not knowing what the next 6 hours would bring.”
While Jamie was in theatre Carien tried in vain to keep herself busy. “Your mind cannot shut out the fact that your baby is undergoing open-heart surgery,” she says.
The family were updated every hour, and when their baby was eventually wheeled out of theatre, Carien was overcome with emotion. Little Jamie’s eyes were taped closed; she had draining tubes coming out of her chest and ventilator tubes leading into her lungs. “It was shocking to see,” says Carien, “but at the same moment I was so relieved to have her out of the operating room and breathing.”
It just doesn’t end
The family’s relief, however, was short-lived. Jamie soon had to undergo yet more surgery due to fluids that developed around her little heart. “Having to carry her into that operating room for the third time in 2 months was heart-breaking,” says Carien. “I was starting to feel that the universe was against us and that I was being punished for something I did wrong. Everything was just getting too much.”
After the surgery, Jamie was denied painkillers for medical reasons and had to suffer in silence as the pipes running down her throat and nose prevented her from crying out. Carien felt hopeless.
A little survivor
But the little girl’s fighting spirit saw her bounce back in no time. One month after surgery Jamie’s echocardiogram showed that her heart was working as if it had never even had a defect. It was perfect. When Carien left the hospital that day, she broke down crying, only realising then the full extent of what she had been through.
It is unlikely that Jamie will have any more difficulties with her heart, but she will still develop slower than other children her age due to her condition and faces weekly therapy and regular check-ups. While Jamie won’t hit every milestone like other children, Alan and Carien are content that she will do everything in her own time.
“Those things don’t matter to us,” says Carien. “The fact that she is healthy and alive is all that matters to us. There is nothing that love cannot cure,” she adds. “We have made it through this. We can make it through anything.”
Accepting the unexpected
The Harcombes left South Africa in 2010 and moved to the Cayman Islands in search of an adventure. They never expected, however, that their lives would become as eventful as the past 2 years have been. But Carien insists that if they were given the chance to change their situation, they wouldn’t.
“Many think Down Syndrome is an illness,” she says. “The flu is an illness. Cancer is an illness. But Down Syndrome is not something you can catch, and it’s not something that needs to be cured. My wish is that every person who fears people with genetic disorders, or who fear giving birth to one, can meet a little Jamie in person.”
How does Down Syndrome affect babies and children?
It’s important to remember that children with Down Syndrome are not sick. It is a condition. Children with Down Syndrome can usually do the things that children without the condition can do, such as walking, talking, etc. However, it may just take them a bit longer to learn these skills than unaffected children. Their bodies may tire easily, and they may need a little extra time to respond.