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WOONSOCKET â€” Kayden Watson was still in his motherâ€™s womb when a sonogram foretold the story of his fragile life.
At the age of just 14 weeks, the pictures clearly showed that his intestines were growing on the outside of his tiny body, recalls his mother, Jennifer Harken.
Itâ€™s a condition called gastroschisis.
â€śWe were told a lot of kids had it and it would be okay, they would put them back,â€ť she says.
But it would be far from okay. Today, at the age of 19 months, Kayden gets most of his nutrition from a vitamin-rich fluid called TPN that is pumped into him daily through an intravenous port in his neck.
Another port on his belly allows him to ingest something akin to semi-solid baby food.
With big curious eyes and playful hands that want to touch everything, Kayden doesnâ€™t seem bothered by his medical problems. But his mother says the plain truth is that Kaydenâ€™s survival, sooner or later, will depend on him getting a liver and small bowel transplant. And he wonâ€™t even get on a donor list unless his condition is considered a medical emergency, which means heâ€™ll already be very ill when that time comes.
Itâ€™s something she tries not to dwell on.
â€śI donâ€™t want to cross that bridge until we come to it,â€ť she says. â€śThe only way he can get on a list is to have liver failure.â€ť
Since heâ€™s considered disabled, Kaydenâ€™s medical treatment is entirely covered by government programs, which is a good thing. Because TPN, which stands for â€śtotal parental nutrition,â€ť costs several thousand dollars a day, his mother says.
But his medical insurance doesnâ€™t cover ordinary related expenses, often for small things that add up fast. Like all the gasoline she and Kaydenâ€™s father, Dan Watson, burn through on regular trips to Women & Infants Hospital in Providence.
In a gesture of compassion for the family, a group of friends has graciously organized a yard sale today at 552 Front St. to help Kaydenâ€™s parents make ends meet. It starts at 8 a.m., with a rain date of July 28.
Experts say about 1 in 10,000 infants are born with gastroschisis, more often in boys than in girls. Family genetics are thought to play a role in many of the cases.
But Kaydenâ€™s problem is no longer gastroschisis. His doctors eliminated that problem surgically after he was born.
The solution was to pretty much remove most of Kaydenâ€™s intestines.
In many ways, it wasnâ€™t a solution at all because now Kayden suffers from another condition known as short-gut syndrome.
Though short-gut syndrome can be caused by certain diseases that interfere with the intestinal tract, Kaydenâ€™s case was caused the same way as most others â€“ it was man-made.
If Kayden were physically normal, he would be well on his way to eating solid foods with the rest of his family, and he wouldnâ€™t need intravenous ports. Because he has short-gut syndrome, he canâ€™t get enough nutrition in his body to stay healthy by eating regular foods.
As challenging as it is to care for Kayden now â€“ itâ€™s a full-time job â€“ Harken says she knows the challenges will only grow larger and more emotionally difficult as he grows older.
Being his mother doesnâ€™t make it any easier to deal with, she says.
It just makes it possible.
â€śYou just do it,â€ť she says. â€śWhen itâ€™s your baby and you look at him every day, it makes it all worth it.â€ť
Donations will be accepted at the yard sale or they can be sent directly to Dean Bank, c/o Kaydenâ€™s Corner.