Luv 4 Olivia

Times Reporter   

  

Pulmonary hypertension (PH). Those two words are the cause of an outpouring of love and support from Langdon and surrounding communities. They are also the two words that have changed the lives of Heather and Phil Zloty forever. 

Their daughter Olivia, 3, was diagnosed on Sept. 26 and immediately flown to Edmonton with her family. She has idiopathic pulmonary hypertension. The disease closes her lungs, and her heart is trying to pump against the lungs that are closing and can’t. Her heart is pumping so hard it’s actually doubled in size and is now not pumping as hard. The doctors don’t know the cause: sometimes it can be from a missing valve or a deformity. Usually children with PH already have preexisting conditions, but with Olivia there was nothing. 

“Everything is where it’s supposed to be and everything looks the way it is supposed to, so they don’t know why she has it,” said Heather Zloty. 

Everything really began in May when the Zloty’s took Olivia to the doctor because she was tired all the time. She was in soccer and wouldn’t run, and seemed to have no energy. That doctor told them she was probably out of shape from the winter. They went to see another doctor when the symptoms were persisting in the summer, and this time were told that she was probably just going through a phase. 

It wasn’t until they went back to yet another doctor in September that answers came. 

Originally the plan was to send Olivia for an X-Ray and schedule a cardiologist appointment in December. After the X-Ray they were told that the cardiologist wanted to see them right away, and have Olivia undergo an echocardiogram. The family figured they would get a call with results in a week or two, but almost immediately they were told they had to go to the Children’s Hospital. Olivia was put into quarantine in the Intensive Care Unit, and later they were flown to Edmonton. 

“It’s hard we thought she was tired but healthy, and now we’re coming home with someone who’s even sicker than when we went in,” said Zloty.

“It was just so out of the blue, and that’s the big thing, none of us had any idea something was wrong, and especially not to this degree. Hearing over and over again how serious it was and your child is going to die, it was (scary).”

Olivia is now on a triple therapy: two of the drugs are oral and one is a pump, similar to an insulin pump, and has to be on her all the time. If it’s off for more than 30 minutes it can be fatal, and only eight kids under the age of 14 in Canada are on it. 

“Hospitals don’t stock it, so we were told we always have to carry it with us. If something happens and we have to be sent to the hospital, nobody is going to have this drug because it’s just so rare,” said Zloty. 

Thanks to a program set up by Dr. Adatia, Olivia’s doctor in Edmonton, the family doesn’t need to worry about the costs of the drug. The doctors don’t have a prognosis at this time, nor do they know what dosage Olivia should be on. Zloty said it’s a trial and error thing, they don’t even know if the meds will work. 

Olivia’s heart pressure at the hospital  was at 125. Normal high for a person is 30, and for a severe cause of pulmonary hypertension it’s 75. 

“She could have just walked down the hall and had a heart attack, so they’re that high. We’re just trying to keep her calm, and it could be six months, it could be 10 years, we have no idea, and they have no idea either,” said Zloty. 

Phil is staying home for now so they can figure things out, but plans to go back to work in November, depending on how the next couple of weeks go. Olivia has to see the cardiologist every two weeks here, then see an endocrinologist and do a liver x-ray, and every three months they go back to Edmonton for more testing. 

“There’s just going to be so much back and forth that for now he just needs to stay home so we can figure it out,” said Zloty. 

PH is a progressive disease that has no cure. The only way doctors can test for the condition is with a cathetor/camera up through the patients groin and into their heart, said Zloty, and they can only do so every six months.

“We’ll just take anything we have with her and hope the medicine changes,” said Zloty. 

When friends and family heard the news, they too were devastated and were trying to figure out how to help. 

“When everything went down … I couldn’t physically be there for them so I wanted them to know that we were all here for them,” said JoAnna O’Neill, who has been friends with Heather since they were five. 

She created the Luv4Olivia w/pulmonary hypertension page through GoFundMe, http://www.gofundme.com/f9ol5s with the goal of raising $50,000 for the Zlotys. 

As of Oct. 14 just under $21,000 had been raised. 

“The GoFundMe just seemed like a way for everybody to rally together and not have to be in the same place,” said O’Neill.

“We’re just so amazed that everybody has rallied together. Its that feeling of you can’t do anything to fix it and you can’t always be with them, so at least we’re doing something that will help make it a little less difficult, they don’t need to worry about those bills and all those expenses.”

Another way the community has banded together is by creating a meal train, which can be found at https://www.mealtrain.com/invitation/Default.aspx?id=m21ishj7hhct. Anyone interested can sign up, and pick a day to help feed the family. 

“Instead of having like 10 lasagnas show up on your doorstep it kind of spaces it out so they get food on a regular basis, it just kind of organizes people’s need to bring you food,” said O’Neill. 

“The meals are really good because I don’t have the brain capacity to deal with groceries or deal with any of the meals. That GoFundMe site, just so we can start to pay for some of the stuff we had to get and get her set up with,” said Zloty.

There’s also a plan to create T-Shirts with the Luv4Olivia logo, and sell them to raise addition funds. 

“Its just another symbol to show that we’re there for them and hat we love them,” said O’Neill. 

On Nov. 15 there is also a FIT for Olivia- Living Well in Langdon fundraiser, with a silent auction and raffle. Most of the events can be found on the Langdon – The Good Luck Town Facebook page. 

Zloty’s advice for other parents is, “Keep pushing, trust your instincts. . We knew something was wrong, and we asked and we asked and we asked, we knew something was wrong and everybody just kind of said, ‘oh no it’s fine.’ And all their answers could have been right but it wasn’t.”

For now the Zloty’s are trying to figure out what to do, and how to create a new routine in their home that will ensure Olivia is both safe and happy as everyone learns to deal with the news. The Zloty’s also have two sons, six-months and two-years-old.