ARCANUM — A benefit is set for 9 p.m. Friday at Hot Rods and Harleys for 7 1/2-month-old Jack Monnin, who underwent a liver transplant this past Saturday at Cincinnati Children’s Hospital.
Featured at the event will be a karaoke contest, auction, a 50/50 drawing, door prizes, die-cast sprint car autographed by Kasey Kahne, multiple autographed NASCAR items, Ohio State items, gift certificates, gift baskets, hats and many other items.
“We will have t-shirts available for order and JACKSTRONG bracelets available for purchase,” said Gina Ferguson, who is married to the infant’s uncle, Dallas Ferguson, a brother to Jack’s mother. “Come, have fun, and help us support a little boy fighting a big disease! What would you do you if someone you loved with every ounce of your heart and soul was waiting on an organ to save their life? Well, that’s what my nephew has been doing since he was 2 months old.”
Jack, born Jan. 17 this year, is the son of Jeremy and Amy Monnin and the baby brother of Alex, 11, Levi, 9, and Reece, 7, of Arcanum. He is also the grandson of Mike and Cheryl Ferguson, Diana Monnin Oliver and the late Ron Monnin, and great-grandson of Richard and Donna Clack.
At the age of 2 months old, Jack was diagnosed with biliary atresia, a rare liver disease. Two weeks later, he had a surgery, known as a Kasia procedure, done.
“When successful, this provides children multiple years of growing and somewhat normal lifestyle,” said Ferguson, who spent a lot of time with the family at the hospital in the beginning. “For Jack, this procedure was unsuccessful. He has developed many of the complications with liver failure, shortening the amount of time to find a compatible liver for Jack.”
Biliary atresia is a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about 2 to 8 weeks after birth.
“Some could be born with it, or it could just be a viral infection,” she said. “Jack started to show signs at about 2 weeks old. He turned jaundice but didn’t know he was because he was breast-fed. When he was almost 2 months, the pediatrician was concerned because he was so jaundice, more than the breast-fed jaundice.”
As soon as Jack was given an ultrasound, he was transferred from Dayton Children’s to Cincinnati Children’s on March 28 at which time he had undergone the Kasia procedure.
According to some medical information that Ferguson shared, cells within the liver produce liquid called bile. Bile helps to digest fat. It also carries waste products from the liver to the intestines for excretion. This network of channels and ducts is called the biliary system. When the biliary system is working the way it should, it lets the bile drain from the liver into the intestines.
When a baby has biliary atresia, bile flow from the liver to the gallbladder is blocked, causing the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells (cirrhosis), and eventually liver failure.
“First they get fibrosis and then cirrhosis,” Ferguson said. “His gall bladder disintegrated because it wasn’t used. They did the Kasia and found the veins in the liver that are good. They took a piece of the large intestine and looped it and formed a bile duct and connected the large intestine straight to the liver. Then, the liver let the bile straight into the intestines. But, with that comes its own set of problems, including infection, and he had to be put on antibiotics.”
Various family members were tested for a live transplant, but none were completely compatible.
“You can have living donors,” Ferguson explained. “They can take a small portion of the left quadrant of a live donor for an infant. Your liver regenerates every six to eight weeks for someone his size.”
Jack was put on the transplant list on July 17.
“It [the transplant] goes by the numbers on their labs,” Ferguson said. “Jack started at 24 and his doctor was able to apply for UNOH, giving him three points a week. It ended up two weeks ago when they bumped him 10 points at once. He started developing fluids on his lungs and went downhill quite quickly.”
She said her nephew’s stomach was so big because of the fluid building up.
“He had been very cranky and you had to hold him a certain way, walk and walk for hours with him and bounce him,” Ferguson said. “As he got bigger, it was harder to hold him. He had C- Diff and was in isolation most of the time and couldn’t leave the room. He stayed there all that time.”
Then, the call came.
“I was notified at 7:30 a.m. Saturday,” said Ferguson. “It’s amazing. Ever since, I have not been able to stop thinking about the donor’s family. I’m kind of numb over this. I’ve always been an organ donor and can’t stop thinking about that family of the person who saved my nephew’s life. Everything has gone picture perfect…only thing four units of blood. I can’t get over it. My heart goes out to every organ donor out there. You never truly understand until something directly hits home. That’s when your eyes are really opened up.”
According to her, it took six hours to do the transplant.
“They came out at least every hour to let us know what was going on,” Ferguson said. “I have nothing bad to say about that hospital.”
Her nephew will be there for a little while, and even when he’s dismissed the family will be staying nearby at a Ronald McDonald House so the medical officials can keep tabs on Jack.
All the family knows is that it was an adult liver which came from somewhere in the tri-state area….Indiana, Michigan or Ohio.
Now, Jack’s facing managing meds for life and blood tests to monitor, catching up on development milestones [sitting, rolling, crawling, eating baby food, pinched grasp, etc.], physical therapy because his abdominal muscles were cut; another surgery to close his abdominal wall; surgery to remove his central line; risk of infection from suppressed immune system; the possibility that his body could start to reject his liver [this can happen days, weeks or years after transplant]; learning to eat again; medications to correct side effects of his other meds; and missing school because of hospital stays.
He can’t receive any live vaccines- rotavirus, MMR, and chicken pox to name a few; be around unvaccinated children or adults; and he shouldn’t be in large crowd situations for at least the first year [malls, movie theaters, children’s museums to name a few].
Jack is now in the ICU.
“He’s very susceptible right now,” Ferguson said.
Those wanting any more information about the upcoming event can contact Ferguson at 937-459-2757.
“I want to thank every for all of the donations given for the benefit,” she said. “We appreciate all the support of the community. I thank each and everyone who has prayed, donated and shared our story. You all have been a blessing to our family.”
Linda Moody can be reached by calling direct at 569-4315. Be her friend on Facebook by searching her name. For more features online, go to advocate360.org or “like” The Daily Advocate on Facebook by searching Advocate360