A lot of people have read about Kate Cox, whose unborn child was diagnosed with Trisomy 18, and their hearts have ached for her. It's an intense scenario that no one could fully appreciate unless they've been there.
But with the pain comes a message of hope. And perhaps surprise.
For those unfamiliar, Cox is a woman who petitioned the Texas Supreme Court because the state's law wouldn't let her abort her 21-week-old unborn child, who was diagnosed with Trisomy 18. In the end, she sought to travel out of state to end her child's life.
Trisomy 18 is a condition where babies are born with three copies of chromosome 18 instead of the usual two. It appears by chance during conception.
Babies with this condition are usually smaller at birth and have distinctive physical features, which include a prominent back of the head, small eyes, mouth, and jaw, unusual-looking ears, a clenched fist 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.
About 70% of these babies with the condition die in utero, and of the children who make it through birth, only about 10% survive past the first year. However, that number could be higher if doctors offered care to these babies … but they typically do not.
Here's the message of hope that may also shock you because it goes against everything you might have heard: Trisomy 18 isn't always immediately fatal.
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At Children's Hospital and Medical Center in Omaha, Neb., doctors are proving this point. Dr. James Hammel, former division chief of Cardiothoracic Surgery, emphasized that their proactive approach, including necessary surgeries, has resulted in remarkable success rates.
How successful?
Between 70 to 80% of Trisomy 18 babies survive their heart surgeries, with 50% living up to 16 years and older! There will be more about one teenager with the condition below.
Expectant parents who have been given the heartbreaking news that their child has Trisomy 18 are flocking to Children's Hospital.
"Yes, these kids have functional limitations, but there is plenty of room to make their life better,” Hammel is quoted as saying in an article from Live Action News. “I've always said if I can improve a child's chance of survival from five percent to 10 percent, I'm perfectly happy to take that on if that's what the parents want to do."
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He's also on record saying in a report for the Omaha World-Herald that the designation of "incompatible with life" currently applied to children with Trisomy 18 was previously assigned to those with Down syndrome, who have gone on to double their life span —thanks not only to breakthroughs in medical care but also the willingness of doctors to address these needs.
"What's changed is the understanding (that) if you treat the issues they typically have, they can live a long time. They can learn and grow and participate in life," Hammel told the World-Herald.
The Board of Directors of SOFT (Support Organization for Trisomy 18, 13 & Related Disorders) released a statement on December 14, which also disproves the ongoing narrative that Trisomy 18 is always a death sentence.
"Recent news stories have characterized trisomy 18 as "deadly," "fatal," and "not viable," among others," it reads in part. "However, recent advances in medical research, particularly through peer-reviewed papers from North America and Japan, challenge this historical narrative. The data from these studies suggest a significant shift in the landscape of trisomy 18 outcomes in live-born babies. Contrary to earlier findings, one-year survival rates for infants are now 3-4 times higher, ranging from 12-19%. The survival rate for these children increases to a rate of 30–50% with intensive intervention."
In a recent live webinar with board-certified OB-GYNs Dr. Christina Francis and Dr. Susan Bane, Brad Smith appeared with his wife, Jesi, and their daughter, Faith, who has Trisomy 18.
"Faith was born on December 23, so her birthday is coming up next week, 2008. So, she will be 15 years old," Brad Smith said. "She is a sweet kid. And frankly, all of these Trisomy 18 are the happiest, sweetest kids you could ever meet. They have great spirits about them, and they love people."
Jesi Smith said it works that Faith is the youngest of their five children, and the four siblings are strong advocates for their sister.
"All those things you get scared at the beginning that doctors tell you, like 'Oh, what will this do to the other children?'" she said." And we always tell other families that [it will do] everything you hoped it would! They will have soft hearts and tough minds because they are used to loving and seeing the great value of their sibling. And so what a gift she is to our family!"
Jesi said she also understands that parents fear what will happen to their other children if they have a disabled brother or sister with Trisomy 18.
"I've heard fights [where the other kids say] 'Oh no, I'm taking her!" she said. "The blessing of family is not to be diminished at all; it's actually what makes it better."
Jesi and Brad's children have gained a stronger sense of compassion and are always helping others, even bringing food to a family and getting involved with their church to help others with special needs.
Brad cited a study from the University of Michigan with Dr. Glen Green, who found a 90% survival rate for Trisomy 18 kids when full interventions take place.
"These children can live," he said. "This isn't some Doomsday thing that none of them survive. We know a number of people who have children [with Trisomy 18] who are older than Faith.
He also said he knows a lot of parents and doctors express fear upon the diagnosis, but he offered the following advice:
"If you just embrace this,” he said, "and you work with it, you just start treating the child for what they're dealing with, you'll be able to help them."
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Editor's note: Parents who have received a prenatal diagnosis can find assistance and support at PrenatalDiagnosis.org.
