Parents of baby with rare disease will remove his life support
Delta parents Nichole and Joe Kurtz are tasked with the unfathomable Saturday when they plan to end the life of their precious 16-month-old baby, James, who is surviving on life support at a Denver-area hospital.
Life has not been easy for the family who have another child, Joseph, who turned 4 last week.
James can’t breathe without a ventilator or eat without nourishment being pumped into his body through tubes, and his organs deteriorate more every day. Nichole Kurtz said she and her husband would have taken James off life support a week earlier, but they wanted to wait until after Joseph’s birthday.
Baby James seemed healthy when he was born April 22, 2009, weighing 7 pounds, 8 ounces, and measuring 20 inches long. But almost immediately the infant developed complications, and he and his family have been fighting for his life ever since.
Meanwhile, the heartbreaking journey of this family has touched countless other lives after Nichole, 30, started documenting her son’s battle on a blog, and friends created a Facebook page for the child who has an exceedingly rare and terminal disease.
“If anything, this has taught us understanding and patience and given us a deeper sense that life is short,” Nichole said of her family Wednesday, talking on a phone while at her baby’s side at The Children’s Hospital in Denver. “I’ve been like a hermit going through this, but all these people have been here the whole time. I’ve had people tell me it shows them how precious children are, and others have made amends with friends and family. It’s just sad it has to take something like this.”
Friends and family will have a vigil for James at 7 p.m. Friday at the hospital. As family and friends say their goodbyes to the child, local supporters are invited to do the same during a vigil at the same time Friday at Confluence Park in Delta.
Nichole estimates her son has lived half his life in a hospital, and Wednesday marked the one-year anniversary of his first emergency helicopter flight to The Children’s Hospital.
James was born with cataracts, an unusual condition for a newborn, and about a month later the family received the devastating diagnosis of Septo-Optic Dysplasia. That includes developmental disabilities, poor vision and other conditions. At 3 1/2 months, James was using oxygen and had been in and out of hospitals after his lungs filled with fluid, unable to shake a case of pneumonia. When James’ weight dipped back to his birth weight, surgeons at The Children’s Hospital inserted a feeding tube to get nourishment into his tiny body. Family at that time, last October, braced themselves for the worst when doctors told them that if James did survive the surgery, he would need to be on a ventilator for the rest of his life.
“James proved them wrong and came out stronger than when he had gone in. He shocked us all ...” Nichole posted on her blog.
After multiple genetic tests, doctors finally determined that James had Vici Syndrome, the only disease that explained the range of James’ conditions, even down to his blonder-than-blond hair and ivory complexion. The diagnosis was not cheery, the disease documented in only 40 other children worldwide and promising a life-expectancy of no more than about six months to three years.
Of all the documented cases, a doctor told Nichole, her son’s condition was the most severe on record.
As James’ organs started to fail while he was in a hospital bed, his family clung to his small victories. Though James has never smiled or spoke, family celebrated the first time at about 5-months-old when he brought his hands to his mouth. It again was monumental when James allowed his mother to hold him, chest to chest without crying. Children with developmental disabilities often need to feel secure from the front and back, Nichole explained.
Finding toys that would engage James was a challenge, and the family was overjoyed when he clung for up to 20 minutes to a lighted rope of Christmas lights and when he was delighted to have a battery-operated vibrating massager placed underneath his legs.
People say having a child will change your life, but having a child with disabilities, “really, really changes your life,” Nichole said, listing all the equipment needed to make a simple outing.
With the multitude of hospital stays, a steady flow of physicians and the numerous times they worried into the night, the Kurtzes’ lifestyle for more than the past year has been their new normal. James’ brother, Joseph, wondered aloud, “Why?” when he saw another infant, and the baby didn’t have tubes to help him breathe. Another question the toddler asked more recently nearly choked up his mom.
“He said, ‘Are you sure my brother has to go to heaven?’ ” Nichole recalled. “I have to be thankful that James never lived with the fear he was dying.”
During the ordeal, Nichole has been able to be by her son’s side at hospitals while Joe works when he can at his job at Oxbow Mining in Somerset.
Joe, 27, has used most of his vacation time from work, and when he doesn’t work and needs to be near his son, he doesn’t get paid.
Thankfully, the company has kept their medical insurance intact, Nichole said.
Bills for simply eating at the cafeteria for weeks on end have topped $7,000. That won’t come close to the cost of a bevy of hospital bills that will soon come due.
As if they weren’t burdened enough, the Kurtzes were alarmed when their bank account had been cleaned out of about $1,800. Additional bank fees for being overdrawn nearly caused them to miss a mortgage payment, Nichole said. Some family and friends helped pay the house payment, and their bank has since promised to refund their stolen money.
“I just hope whoever stole it needs it more than us,” Nichole said.
In the coming months, Nichole said, she hopes to organize a day-care-sharing network to help families with children who have disabilities.
As a longer-term project she plans to start a nonprofit to help families be with their children if they are hospitalized. Nichole said it was difficult for her to see so many children at the hospital without parents who had to be working.
Sometimes loved ones’ best intentions to console the family came out wrong, like when people said she and Joe were chosen to be parents of James, Nichole said. A nurse explained the sentiment in a different way, one that offered Nichole and Joe a sense of peace.
Nichole recalled the nurse saying, “I think God tells certain souls you’re going to go to Earth and be sick the whole time. Who do you want to take care of you?”