Couple advocates for Down syndrome children

By Whitney White

Canaan — a place where God’s people left behind the old life and crossed over the waters into a new one. Two young people who would eventually become parents of a special-needs child chose this name for their son just a few weeks into their pregnancy. Little did they know how fitting this name would be down the road.

On Sept. 17 around 2 a.m., a young Calhoun County couple quickly abandoned their home and raced to reach Memphis. However, they only traveled a short distance down Highway 8 into Grenada County before pulling over to meet an ambulance on the side of the road in complete darkness. This would undoubtedly be their most memorable journey – “the ride of their lives” one could even say.

Jarrod and Christa Davis, who live a few miles past the Webster County line, were thrilled to find out on May 5, 2015, that they were expecting their third baby boy. Yet, nothing could have prepared them for the news they would receive only a week later.

After having the first trimester screening at 11 weeks, results showed that their baby had three markers leading doctors to believe he potentially had Down syndrome. The three markers were shorter thigh bones, choroid plexus cysts on the brain and a heart issue. A second test at 22 weeks, called the Harmony test, indicated that he was indeed at 99 percent high risk for Trisomy 21, also known as Down syndrome.

Since Mrs. Davis was healthy and in her 20s she only had a one in 1,111 chance in having a baby with DS; however, that number dramatically increases to a one in 385 chance for a mother who is 35. The Davises also had no family history of Down syndrome on either side and they previously had two completely normal pregnancies.

They were told that the only true way to diagnose this baby with DS would be to perform an amniocentesis, the most reliable diagnostic tool. The Davises quickly denied this testing for two specific reasons. The first reason was that this invasive procedure posed measureable risks to their baby; but the main reason was that regardless of what the test revealed, it would not make a difference. Down syndrome or not, this was their child.

Termination would not be an option for them, as it has become for so many. In fact, as a result of this specific prenatal testing, the population of individuals with Down syndrome in the United States has been tragically reduced by 30 percent, even though these tests are often false. The Davises firmly told their doctors that aborting was not an option for their child, and they pressed on.

More time was taken to investigate sonograms, which led them to find that the baby also had a heart condition known as coarctation of the aorta, which could have potentially been life-threatening. This is the narrowing of the aorta and would be the main reason doctors took this case so seriously. Once the baby was born, doctors would only have a small window of opportunity to perform surgery to open up the aorta if needed.

On Sept. 17, the couple was scheduled for an appointment at Le Bonheur Children’s Hospital at 10 a.m. for a routine checkup and sonogram, and they were to then check in to the Fed Ex housing and remain there for two more weeks or until the baby was born. They were set to deliver in Memphis and could not take the risk of not making it to the hospital in time, especially with his heart condition.

Just hours before leaving for Memphis labor began. Luckily the Davises’ car was already loaded and they raced to make it to Memphis on time but barely made it into Grenada where they met an ambulance and this baby was delivered on the side of the road at 2:13 a.m. close to Dixie Auto Sales.

He was then rushed to Grenada hospital and shortly after took his first helicopter flight to Le Bonheur.

Although he was a few weeks early, Canaan Alan Davis weighed 7 pounds 6 ounces. He was immediately put on oxygen and was swollen from the stress of the situation, but most importantly, he was alive. He spent 2½ weeks in Le Bonheur as they carefully monitored his heart and lungs and confirmed that he did have an extra chromosome. He was able to come home for two weeks and then returned for his first surgery.

Six months later, the Davises held a program at the Calhoun City Library on March 21, World Down Syndrome Day. This was a celebration complete with yellow and blue cupcakes for DS. These two parents who were handed a diagnosis that they literally had to research and educate themselves on in months prior, are now determined to be advocates for this child and all other individuals for Down syndrome.

Canaan’s closest friends and family as well as the community were invited to this event to learn more about Canaan and what makes him “extra” special. The children learned that he may have difficulties with hearing and vision, but to take the time to help him. They learned that as he gets older he may become frustrated with simple tasks, and they may need to give him space or a little extra time. They were taught that he may possibly have difficulties speaking and with his fine motor skills, but they need only to be patient with him. Most importantly, they were also taught that he will be happy and kind-hearted, and will likely be the best friend they ever have.

Toward the end of the program Mrs. Davis reviewed the young children on what they learned and asked, “What ways can you tell me Canaan is different from you?”

Six-year-old Aaron White quickly answered with no hesitation, “Canaan has more!”

A simple answer with much complexity. Yes, in many ways Canaan does have more. He has one more chromosome. He has a family that would do more for him than he could ever imagine. He has group of friends that will likely give him more help than he desires at times. He has a community that has embraced him and loved him despite his differences and though he may have vision problems at some point in his life he will always see life in a much more beautiful way than we can ever imagine.

No, this will not be an easy journey for this family. There will be frequent stops to doctors’ appointments along the way to monitor hearing, vision, speech, cognitive and motor skills, and most importantly his heart and lungs. At times the road will be bumpy, scary, and just like on Sept. 17 there may be other unexpected stops, but there will also be more joyous occasions with every major and minor milestone than one can count with this child.

So how can communities help this family and others with Down syndrome? Treat them no different. Realize just like the children at the library program did, that they are “more alike than different” from Canaan. Embrace them and love their family and other families with special needs as a whole. We are blessed to have these individuals with Down syndrome in our communities. The DS population is dwindling away and only one in 700 babies are born with DS in the United States today.

We are fortunate enough to be a part of their lives and the happiness they bring to others. Do not exclude them and never set limitations because of a label. This is not just a child with DS. His name is Canaan. He has no limitations, only great expectations.

The last verse of an old hymn by the Stanley Brothers reads, “Out of Egypt I have traveled through the darkness dreary. Far over hills and valleys and across the desert sands. Thoughts of land that’s safe and homeward I shall not grow weary. I’m camping. I’m camping in Canaan’s happy land.”

The road has not been easy thus far, and they definitely left behind their old life and crossed over to a new one. But rest assured the Davises will not grow weary, for they are “camping in Canaan’s happy land.”

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Whitney White

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COURTESY PHOTOS Christa and Jarrod Davis with their son Canaan.

Editor’s Note: Whitney White of Big Creek is formerly of Webster County, where her husband, Matthew, pastors New Hope Baptist Church.