KAWARTHA LAKES-Three year old Emerson Easton loves Cheezies and peanut butter. His parents just recently found out what Emerson’s favorite foods are because until very recently he has been fed through a feeding tube. “We didn’t even know that he liked food at all, let alone certain, specific foods,” Amanda Easton, Emerson’s mom told Kawartha 411. “He was hungry and started asking, like he wasn’t even talking before, he started talking to us”
Emerson and his twin brother Winston are monochorionic diamniotic (MCDA)twins and were born almost three months premature. MCDA twins share the same placenta. Amanda says at first everything seemed to be going well but when they started to increase the amount of formula the boys were being fed they both started vomiting and making raspy noises when they would swallow. They spent 7 weeks in the Neonatal Intensive Care Unit at Sunnybrook Hospital before being sent to Peterborough Regional. Amanda says doctors passed off the constant vomiting as normal for preemies. But after months of constant trips to the hospital and vomiting doctors decided to do a feeding study and found the boys had Organial Axil meaning their stomach’s are completely roated on their axis 180 degrees and their intestines are rotated.”I was really nervous because they said they weren’t sure if they were born this way or if their stomach was rotating. If their stomach was rotating they could die very quickly, if they were born this way they said they couldn’t fix it and the boys would never be able to eat properly with a condition like this.” Amanda recalls.
But the doctors at Sick Kids came up with a solution. “Sick Kid’s solution was to go back to the beginning and put tubes in their nose. They started with a traditional gastric tube going to their stomach, but unfortunately this did not work, so they advanced them to a stomach tube.” Amanda says. The tube allowed the food to bypass the boys stomach and go straight to their intestine to be digested.
The fix worked well for Winston but Emerson continued to vomit. “His gut doesn’t empty properly, the food was pooling in his stomach and then his reflux would kick in and it would push the food back and because he has so much mucous it’s like a volcano erupting in his chest the food would start to come up. The mucus is was so thick he couldn’t get it out fast enough and when he swallows it, he aspirates. He did this 14 months straight.”
After numerous trips back and forth to Sick Kids and a number of unsuccessful treatments, including a six hour surgery to tie off the bottom of his stomach, doctors at Sick Kids decided to try a drug called Pulmozyme. The drug breaks up the large amounts of mucous in Emerson’s lungs. Emerson’s dcotor says he has a condition that is very similar to Cystic Fibrosis but its not CF. “He’s been in so much discomfort from the amount of mucous on his lungs it was slowing his speech, he didn’t want to eat, he didn’t want to drink, he was lethargic, he was literally like a newborn baby.” Amanda says.
The Pulmozyme worked.”We noticed he was hungry and he was trying to actually eat,” Amanda recalls. “I thought we’ve found our miracle, like this it, my baby is hungry and he can actually chew something and not instantly vomit from it.”
Not only that but Emerson has literally come alive. “He is a different little boy, my god he was a child, a child full of life he was running around our house he wasn’t having choking spells, it was just insane and so instantly we were like we need this drug.”
But the Ministry of Health doesn’t agree. They denied Emerson access to the expensive drug under OHIP and the Exceptional Access Program because he doesn’t technically have CF. “What we dont understand is that they want to pay hundreds of thousand of dollars for this little boy to live in the hospital, with no quaility of life, our family shattered, broken apart, or you can look at him as a person, listen to the doctor who is a Senior Respirologist at Sick kids and give him the drug.”
David Jensen, Communications Coordinator with the Ministry of Health told Kawartha 411 they Ministry looks at a number of things when approving access to certain drugs. “We rely on the advice of outside drug experts when making decisions on what drugs to cover. Funding any drug without proof that it can provide safe and effective treatment is not responsible. We also consider the cost-effectiveness of a drug and effects on other health services so that we can ensure the sustainability of Ontario’s health care system.”
However, the doctor who prescribed the drug for Emerson has appealed to the Ministry to approve the drug for Emerson but was also denied. The drug company gave the family a four month supply free of charge but denied a one year extension to free access. “What exactly are these specialists and who are they because if they would look at his case and look at him as an individual person they would see he has full quality of life because of the drug.” Amanda says.
Pulmozyme costs the Easton’s about $3000 a month which they have been paying for out of pocket but Amanda says it’s putting an added strain on the family. “I feel defeated, I feel there’s pockets of our health care system that are so good and we are preached we have this amazing health care system yet he’s being denied what he needs.”
After our inquiries, the Ministry said they were taking another look at Emerson’s case. “The ministry has reached out to the requesting physician to discuss the results of the case-by-case review.” Jensen stated.
“We’ve had months were we’ve had this little boy thankfully we could do things with, we could go outside, we weren’t scared to be around people, we weren’t on pins and needles all the time, he wanted to sit at the dinner table with us. Amanda says. “This drug is literally saving his life”
For now, Emerson is still enjoying his peanut butter and cheezies because his family is doing everything they can to pay for this drug themselves but that’s not a long term option. For more information on Emerson and his family click here:https://www.facebook.com/permalink.php?story_fbid=703281876537711&id=703264919872740