When you meet Cloey, one of the first things you notice is her unending smile and her friendly, “HI!” As you listen closely, you can hear that Cloey’s speech is delayed, but like other kindergartners, she’s full of questions, curiosity and she loves to look at digital photographs as soon as she hears the “click”! She likes High School Musical, reading books, Disney princesses, and playing house.
Without meeting Cloey’s parents, Megan and Ty, you wouldn’t know by looking at her that she’s already undergone 16 surgeries in her first six years of life. Due to a rare genetic condition, the only documented case ever, little Cloey was born with 5 vertebrae in her neck (compared to the typical 7) along with other conditions that cause her to have problems/deformities in almost every major system of her body. In addition, a narrow spinal column and little fluid caused pinching and damage to Cloey’s spine at birth. Born with respiratory failure, her mommy was told to “kiss her on the forehead;” Cloey was whisked away to the Neonatal Intensive Care Unit (NICU) and intubated with a breathing tube before Megan and Ty even had their first cuddle with their newborn. Cloey remained intubated for the first week of her life and was taken off the breathing machine when she was 15 days old. Just before Megan and Ty returned home with Cloey, the geneticist sat them down and explained that Cloey’s genetic testing showed karyotypes for being severely mentally disabled.
In a blur, Cloey’s young parents were discharged from the hospital and told that her condition was not curable. The physician told them to take her home and love her; he would see them again in six months with more information. Since Cloey’s diagnosis is the only documented case, physicians told Megan and Ty that if she survived her first winter, her life expectancy was three years old – she would be severely physically and mentally disabled and they would have to wait and see about medical problems as they arose.
Megan remembers Cloey being really sick her first year of life. With Cloey’s failure to thrive, she had a nasogastric (NG-) feeding tube (from the nose to the stomach) placed when she was 6 to 7 months old, but when she was not yet 13 pounds at 13 months and still very sick, doctors recommended surgically placing a gastrostomy feeding tube directly into the stomach. “We’d sometimes spend three weeks at a time at the hospital and with each admission the doctors would say ‘We’re not sure what to do. Let’s try this…,” said Megan. “The doctors wanted us to agree to two surgeries for Cloey – one to sew her esophagus shut so that she wouldn’t continue to throw up (fundoplacation) and the other to place the G-Tube. I was also 9 months pregnant with our second child and they wanted me to stop breast-feeding Cloey even though it was the only time she had a cognitive connection and it was the only food she would take. When we asked to have a second opinion or the chance to return home to think and pray about our decision, the hospital called Child Protection Services and we were charged with neglect.”
After visiting the family’s home, CPS realized the family was not neglectful, and the charges were dropped, but the hospital would not discharge Cloey until her parents agreed to the gastrostomy feeding tube surgery. “I couldn’t stand that Cloey already had so many bruises from procedures and had gone through so much torture in her first 13 months, but that our wishes for her quality of life would not be listened to,” reflected Megan.
In that short time, both parents lost their jobs due to all of the time they needed to care for Cloey in and out of the hospital, went through bankruptcy, had their second child, Cal, and started raising funds to get Cloey to see specialists at Mayo Clinic in Rochester, Minnesota. When Cloey was two, she had her first trip to the Clinic. Although Megan and Ty plan on taking Cloey once a year to the clinic to see her team which includes 19-specialists, last year their family went five times, sometimes with brother Cal (5) and baby sister Lainey (21 months) and sometimes with the two siblings staying behind.
Along with an intestinal deformity, and a discovery of allergies to milk, egg and soy, discovered when Cloey was 2, she underwent tracheotomy surgery (direct opening in the trachea) in May 2007. Then, exasperated from fusion surgery in her neck, she developed pulmonary hypertension from severe sleep apnea (up to 52 apneas per hour) and will now likely require ventilator assisted breathing at night.
“While I’m trying to be positive, I realize this is the beginning of a downhill path. If she can work the muscles in the day, she may only need it at night. If she finds breathing too difficult off the vent, though, she may need the ventilator around the clock,” explained Megan.
Cloey’s parents feel fortunate to have nursing at night for Cloey so that they do not need to be up to change the water in her (trach machine) every hour throughout the night, at a minimum, but admit that it’s a lot of work coordinating the care, “There’s such a high turnover rate, that I basically have an ongoing interview process. I also have to talk to our other children about strangers and appropriate/inappropriate touch… we’re asleep when the nurses are in our house,” explained Megan. Even with all of the nursing support, though, Megan and Ty have only had one partial night away for their seventh anniversary last June. With Megan’s sister available to stay and look after Cal and Lainey, along with the night nurse for Cloey, Ty and Megan could get away to a nearby hotel for about 12 hours.
“We’ll always need nursing support for Cloey every night, but Ryan House will improve Cloey’s quality of life by giving her stimulation and somewhere enjoyable since she is unable to go to the neighborhood girl down the street. It will also improve her life by giving our family, and us as the parents, a much needed break so that we can return refreshed to attend to all of her needs.”