In the face of a bad prognosis as he grew up, he and his parents didn't lose hope.
Edwards syndrome (trisomy 18, or T18) occurs when the cells in a person’s body have an extra copy of chromosome 18 (3 copies instead of 2). In this way, it’s similar to Down syndrome, which occurs when people have an extra copy of chromosome 21, but Edwards syndrome causes more severe health problems.
Taking into account the low survival rate and the health complications experienced by babies who do make it to birth, many parents choose to have an abortion when the syndrome is diagnosed before the 24th week of gestation — 75% of parents in the USA and 90% in Europe, according to SOFT (The Support Organization for Trisomy 18, 13 and Related Disorders).
Similarly, after birth, many doctors and families opt for palliative care, rather than the more costly and difficult medical interventions that may or may not prolong the baby’s life and possibly dramatically improve his or her quality of life.
Courage and hope
In the light of these statistics, we can only take our hats off to the courage and love for life shown by Kayden’s parents, Marta and Frank, and his three siblings, Braden, Jaiden, and Anjali, who love and support him. Instead of seeing only the difficulties of his prognosis, they saw the hope and dignity of their child’s life. In a conversation by text message, Marta told me, “How we always viewed things when making choices for Kayden to be treated was, if we were given a 90% chance to die and a 10% chance to live, we know we would fight for that 10%, so how could I do any less for our child?”
Kayden was born with a cleft palate and an abnormally small jaw (Pierre Robin syndrome), a hole in his heart (VSD), and other medical problems that became identified as time passed. At birth, his tongue was blocking his airway, and three days later he had to have a tracheotomy to help him breathe more freely. Things weren’t looking good.
“When Kayden was about a week and a half old, the testing came back, and next to his bed side they told us he would die soon. We were told only 10% make it past their first birthday and that if he did survive longer he would be like a vegetable and wouldn’t do anything or know us,” Marta told me. Yet, here Kayden is: 18 years old, and a high school graduate.
Insisting on treatment
The road from his diagnosis to his 18th birthday has been a long and challenging one. The doctors often reacted to his needs with a pessimistic outlook. Marta says that early on, “they found that he had malrotation of the bowels and intestines, and that it could cause a painful death if not repaired.” They suggested that Marta and Frank might choose to omit treatment because Kayden had T18. “I replied, ‘Wait, you just said that if it’s not repaired it would cause a painful death. So, yes, I want you to repair it, and while you’re at it, please place a feeding tube.’ I thank God I didn’t for one minute think we shouldn’t do the surgery.”
After the first few several years, his condition stabilized, and he was able to stay out of the hospital for eight years, until 2016, when he had to undergo emergency surgery twice. Last year he had spinal surgery, and he will be having open heart surgery later this month.
At one point, the hospital told Kayden’s parents that the cardiac team was no longer willing to operate on trisomy children, and that no other hospital in Minnesota would do heart surgery for these patients either. His parents didn’t give up: “They were so wrong. We found a hospital in Minnesota not far from them that would treat our trisomy kids.” Marta says “kids” in plural, because she has become an advocate and supporter for other trisomy kids and their families.
Challenging, but rewarding
The willingness of some doctors to write Kayden off as a loss and let him die because he has T18 has been difficult and sad for his parents, although they have found support. However, “the most challenging as a parent of Kayden,” Marta explains, “has been the unknowns—never knowing for sure we would have all this time; waiting in fear the first year of his life for him to die—and over the years, to be honest, worrying each time he would get sick or need surgery, being afraid this could now be it.”
At the same time, it has been a deeply rewarding experience. Kayden has kept a positive outlook despite all his difficulties. “[He’s been through] all these things, and you would never know by looking at him. He is the sweetest, happiest boy I know! … The most rewarding part is how much having a child like Kayden teaches you about true love and sacrifice. Just watching him grow and truly love his life, and knowing he will only always know love, is rewarding.”
“Let your baby lead you in your choices”
I asked Marta what advice she would give to other parents who are told their child has trisomy. “I always suggest that first and foremost they need to know that doctors do not always know everything, and none of them can tell you how long you will have with your child. I tell them, ‘Let your baby lead you in your choices. If they are fighting, you fight. I believe you will know when enough is enough, or if you need to keep fighting. It’s important to know that, as scary as it all may sound, it’s also a huge blessing.’”
You can follow Kayden’s progress on Facebook at Kayden the HOPE in trisomy 18. Statistics tell us that most children with T18 will not live as long as Kayden has; however, the value of a life isn’t measured by its length or by its “quality,” but by the intrinsic human dignity of the human person, made in the image and likeness of God.
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