Kyle receives wish from Children’s Wish Foundation
Many women go through their pregnancy having ultrasounds and different tests done and are told that everything is fine with their baby.
© Cindy Cox photo
Kyle Organ and his sister Keira with their Wish Bears from the Children’s Wish Foundation.
That was the case for Shelley Organ from St. Alban’s. She never had any complications during her second pregnancy, except the issue of her diabetes which was being monitored closely by Dr. Steve Parsons and the Diabetic Clinic in Grand Falls.
On Nov. 9, 2010, Ms. Organ had an emergency c-section performed after the weekly biophysical test was done. The biophysical is a painless test that helps to determine the baby’s wellbeing, specifically if he is getting enough oxygen.
The baby scored 2 out of 8, so within minutes everyone was preparing for an emergency cesearean section delivery. A beautiful baby boy, she named Kyle, was born shortly after at 8 ½ months (38 weeks), weighing 10 pounds and 11ounces. Within minutes his mom was told that they lost his heartbeat during the operation. The delivery room medical team at the hospital in Grand Falls-Windsor worked on him for 17 minutes and were ready to give up when Kyle started to respond.
Twelve hours after his birth, after he was stabilized, Kyle was transported by air ambulance to the Janeway Hospital in St. John’s. His mother says he fought hard for the first six months of his life.
“The doctors told me for the first two months that he may not make it,” recalls Ms. Organ. “He was a very sick baby and the outlook was grim. They did not have any answers other then he couldn’t breathe on his own and there were no brain waves being detected.”
Kyle has incurred many surgeries to date including a G-Tube (Gastro) at age six months for feeding because he lost his sucking reflex where he was on a ventilator for the first three months of his life. A g-tube was inserted through Kyle’s abdomen to deliver nutrition directly to his stomach. He also had to undergo surgery at the Janeway for a hernia repair.
“He still has the feeding tube but hasn`t used it since July 27, 2013. “If he can go a full six months without using it, then his doctor will remove it permanently,” said Ms. Organ.
His second surgery was to install a shunt because he had hydrocephalus, which means fluid on the brain. This was causing Kyle’s ear canals to be blocked by the fluid and he was said to be profoundly deaf because of this. Due to the fluid build up, Kyle’s brain could not grow. The surgery was performed when Kyle was 14 months old. The shunt drains the fluid from his brain into his stomach.
At 23 months of age, Kyle went back to the Janeway for his third surgery, his second hernia operation for Hernia Inguinal. Inguinal hernias are the most common type of hernias. They occur in a part of the abdominal wall known as the inguinal canal, where a man's testicles must descend before birth. This leaves a natural defect called the internal inguinal ring that can develop into a hernia if it doesn't seal properly.
Kyle's fourth surgery was the Cochlear Implant, which took place on Aug. 9 of this year. Everything went great, his mom says. They doctors have high hopes that Kyle will regain some hearing again and that was enough for Kyle’s parents.
“Kyle has been through so much and he amazes me everytime.”
Kyle returned to the Janeway Sept. 6 to have the Cochlear Implants turned on.
“He responded with his Cochlear Implants and his hearing loss went down from 90% to 55% and they only have his level turned up on three until he learns to adjust to the different sounds. When the audiologist turned them on and spoke to Kyle, he immediately turned to her and smiled, then began to laugh. It was an unbelievable feeling.”
On Sept. 19 Kyle was scheduled to have one more surgery to repair another hernia. This one is located in his lower groin area.
“It doesn’t seem to cause him discomfort but still needs to be repaired,” says his mother. “He now has several challenges ahead of him and that would consist of learning to walk on his own, eat regular and learn to speak words and sentences.”
He is truly a miracle child who has come so far and always has a smile on his face. Currently he is still eating baby food and drinking milk from a straw. His mom said that he has tried a few other foods in small portions but it’s a process.
His mobility is also starting to improve.
“He can make six steps on his own now and walk anywhere if he has a hand to hold. He seems to be babbling a lot more and trying to communicate with us. With his hearing improved, he now has a better chance get caught up the kids his age.”
Kyle has just received his wish bear from the Children’s Wish Foundation and his family has five years to decide where they want to go.
“We are waiting for Kyle to be able to choose for himself. Right now, we are very thankful to the Janeway staff and the Children’s Wish Foundation for making this experience less difficult and helping us throughout the past three years.”
Kyle Organ is two years and 10 months today and has proven to the doctors at the Janeway that Miracles do come true.