Kaitlin Porter and Joel Breen of Lochaber, Antigonish County, have been on an emotional rollercoaster over the past few months.
Their daughter Everly was born with a congenital heart disease – something Porter and her boyfriend found out while Everly was in utero, through ultrasound at the 20-week mark of Porter’s pregnancy.
Before Everly was born, her parents knew her pulmonary artery and aorta were connected to the wrong ventricles in her heart – a transposition of the great arteries. This condition, on its own, interferes with blood flow.
Everly was also born with a ventricular-septal defect. Part of the wall of tissue between the two lower chambers of her heart was missing, which meant there was only one, larger chamber where there should have been two.
Unexpectedly, and days after she was born, Everly required life-saving surgery at the IWK in Halifax.
Porter and Breen knew their daughter would need surgery but assumed it would not be necessary until Everly was six months old.
That, however, wasn’t how things panned out.
“At two days old, Everly became very sick, and they needed to do the surgery immediately.”
Naturally, Porter and Breen were very scared for their young daughter’s future.
“I didn’t even realize anything was wrong before her diagnosis,” Porter said. “Basically, two main blood vessels were running parallel instead of across one another, and both led into the right side of the heart, instead of one going to one side, and the other going to the other.”
Porter said the first thing she and Breen said when they found out about Everly’s condition was, “now what?”
Shortly later, they learned what had to be done at the IWK, when the cardiologist outlined for the long, complicated road ahead.
“The doctor went over the diagnosis, and was like, ‘this is what it is, here is how it will affect her,’ along with a plan for surgery,” Porter said.
So, at two days old, weighing six pounds and with a heart the size of a walnut, Everly underwent her first open-heart surgery.
That first surgery was a success, Porter said, in a call with the Casket. As she spoke, the sounds of Everly communicating in the simple sounds only an eight-month old baby uses to speak, echoed happily in the background.
Since her surgery, Everly has been doing well – she and her parents returned to Lochaber and have been there since November.
Things are going well, but with caveats – Everly’s parents have to make sure she stays well, measuring her weight and oxygen saturation numbers. The other cloud on the horizon is that Everly’s first surgery was only the first of three the doctors anticipate her to require.
“Kids with heart defects have a lot of trouble eating, gaining and maintaining weight,” Porter said. “That’s been the biggest struggle now. She is preparing for another surgery. We’re not exactly sure what the date is, but they said it has to be between six and nine months, so we’re getting close.”
The technical term for Everly’s second surgery is a cardiac catheterization – one in which a vessel will be put into a blood vessel, through a leg and eventually into the heart, to get a better idea of its inner workings – specifically in relation to blood flow.
Porter and Breen are nervous, “because we’ve been through one open-heart surgery. This one isn’t as serious, but it’s going through her body into her heart, and there are risks with that,” Porter said.
Something that makes Porter particularly nervous is “we don’t know what they’ll find or how she’ll do after that.”
Everly’s unique heart will “never be normal, but it will be functional,” Porter maintained.
To put it into context, Porter knew in advance about the challenges that lay ahead of her, and her daughter. She noted she knew things would be unique well before Everly was born.
“During my pregnancy, they wanted me to move up at the 37-week mark. They wanted me to give birth in Halifax, and to be in Halifax before that point, in case I went into labour.”
It was a good thing she followed their advice, Porter noted, because the day after she moved to Halifax, her water broke, and she went into labour.
Although she is nervous for what is to come, Porter is thankful for all the support she and Breen have gotten from the outset of the events with Everly.
To help support the family, Porter’s sister helped set up a GoFundMe page to help raise funds for necessities like groceries, while Porter and Breen are in Halifax.
The support the funds were able to provide was essential and valuable, in the six weeks Porter and Breen spent in Halifax during Everly’s birth and the events that followed.
“It was a big relief,” Porter said. “We had a lot of support for us, and the days can be so long and feel like they run into one another.”
“Joel had to go back to the house a few times, because we have animals, and to get the house winterized, but his company was able to put him off work as a caregiver’s benefit-type of thing,” Porter explained.
Porter and Breen want to raise as much awareness as possible and are working with the Molly Appeal to raise money in support of research of congenital heart disease.
“One of the members of the team reached out to us and said they were looking for the mother of a baby with congenital heart disease,” Porter said. “I was immediately like, ‘Yes, I want to help raise funding and research.’ It’s very underfunded, and common.”
The Molly Appeal is raising funds to support a biobank – an accumulation of information that medical researchers can use to learn more about heart failure and other forms of heart disease.
The biobank will contain clinical information and tissue samples from heart failure patients, noted Thomas Pulinikunnil, a researcher at Dalhousie Medicine New Brunswick (in Saint John).
In a release from the Dalhousie Medical Research Foundation, Pulinikunnil noted the information collected from a patient with congenital heart defects, “can help us create zebrafish models of infant heart failure, which can be used to learn more about heart failure in infants and how best to control it.”
Porter noted, heart conditions happen to one in every 1,000 children born, admitting that before Everly was born, she wasn’t aware of how common such issues area. There is currently no known cause for the kind of heart defects Everly was born with.
“I didn’t think it could ever happen. Now, I want to contribute as much into it as possible to raise awareness and funding for research, because most of the doctors involved with this are at Dalhousie, and they are so connected with the IWK; it just seemed a good fit,” Porter said.
“Heart disease and heart failure are not just diseases of people over 60, they affect people of all ages. We’re happy to support the Molly Appeal in helping researchers in the Maritimes lead the way to new treatment and cures.”