Family Life, Health, Uncategorized

Navigating Trisomy 18 with Resilience Kade’s Story

Just before Mother’s Day in 2019, Jayda Sanders was overcome with joy to find out she would be welcoming her third baby in January 2020. As a mother of three, Jayda sees babies as gifts from the Lord and believes each tiny life is precious and wonderfully made. But what began as excitement and hope for a new baby, shortly turned into anxiety and fear when Jayda heard the word “Trisomy 18” come from her obstetrician’s mouth. This diagnosis came shortly after a routine sonogram when additional tests were ordered after the scan showed fetal abnormalities. Doctors deemed Jayda’s pregnancy as “incompatible with life.”

“It was this deep, gut-wrenching feeling in my chest that something was terribly wrong with my baby,” Jayda says. “My doctor informed me of the suspected abnormalities and conducted genetic testing, known as an amniocentesis.”

An amniocentesis draws out amniotic fluid and uses the DNA within the cells for the diagnosis of certain genetic disorders. During a sonogram, doctors informed Jayda that her baby had closed fists and rocker bottom feet, a cyst on his brain, and a possible hole in his heart, known as a ventricular septal defect—classic signs of trisomy 18. They recommended termination almost immediately, but Jayda knew God had other plans for her unborn child. “Despite the harrowing diagnosis, I knew God held this baby in His hands.”

DEFINING TRISOMY 18
Trisomy 18, also known as Edwards syndrome, is a genetic disorder in which babies are born with three copies of chromosome 18, instead of 2. For a reason unknown, this occurs at the time of conception. When this occurs, the extra chromosome 18 disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. This condition occurs in about 1 out of every 2,500 pregnancies in the United States and 1 in 6,000 live births. No two children with Trisomy 18 are alike. Babies born with this condition are affected differently and can show either mild or severe symptoms of this condition. While it is possible to live with Trisomy 18, several studies show a high mortality rate for children with Trisomy 18 before or shortly after birth.

Infants with Trisomy 18 will usually be small at birth and have a recognizable appearance caused by the extra chromosome. Some of these features include: a prominent back of the head; small eyes, mouth, and jaw; clenched fists with overlapping fingers and thumbs; small fingernails; clubbed or rocker bottom soles of the feet; a short breastbone (sternum); and extra skin folds at the back of the neck.

FAITH AMIDST TRISOMY 18
After receiving the Trisomy 18 diagnosis, Jayda fought to prove her son was compatible with life, even while in utero. “Doctors decided that my pregnancy was no longer valuable, because of my son’s condition. They started chalking up every issue to his condition, dismissing me, and making me feel like my pregnancy was a waste,” says Jayda. “But, God.”

On January 9, 2020, Kade Sanders came triumphantly into the world. “He was beautiful. At first glance, you wouldn’t think he had a condition. He was smiling the entire time and took to bottle feeding immediately.” He was originally sent home on hospice, but thanks to his wonderful doctors, he graduated from hospice a year and a half later. “We prayed to be surrounded by people who wanted to treat the problem. Not just Trisomy 18. We wanted doctors, specialists, and professionals to treat him for his ailments and not pass him off just because he has a condition. We want them to see him as Kade, a happy, loving four-year old.”

THRIVING WITH TRISOMY 18
Despite the many challenges, Kade remains a smiley and happy little boy who shows strength, resilience, and joy. “When you see him, you just see love and joy. He is the happiest boy you’ll ever meet, and he is truly made in the image of God.” For the past four years, Kade has received exceptional care from Ochsner Health, especially from Pediatric Gastroenterologist, Dr. Rachel Bernard M.D., MPH.

“Kade has incredible doctors who are interested in who Kade is, and not what Trisomy 18 means. With these professionals, my boy is well taken care of and has the best team looking out for him.” Jayda says. “Trisomy 18 is not an automatic death sentence like it’s portrayed on Google. There is a chance you can lose your child from this condition, but these children are worth it. God has truly blessed me and grown me in so many ways as a mother of a disabled child. I believe that Kade was compatible with life all along. It was all according to God’s bigger plan.”

This article was originally published in March 2024.

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