Heart full of hope
GRAND FORKS — Her pregnancy was progressing well when Cassie Marka headed to the clinic for a 20-week ultrasound procedure in the spring of 2013. She and her husband, William, were excited about the pending birth of their first child.
"We went in to learn just the gender," Cassie Marka said.
But they learned much more.
"They said something was wrong with her heart but we'll wait and take a closer look later," she said.
The weeks between hearing something was wrong and learning exactly what was wrong were "pretty awful."
Although their doctor warned them not to, so as to not become unduly alarmed, the Grand Forks couple searched online for information on heart defects.
They found that a heart defect "could be a small hole that repairs itself in time on up to a hole that needs surgery or as serious as HLHS (Hypoplastic Left Heart Syndrome) which requires three surgeries," she said.
"HLHS is one of the most scary heart defects you can get," Cassie Marka said. She likened it to "being born with half a heart."
HLHS is a rare defect, present at birth, in which the left part of the heart is severely underdeveloped. This malformation, for which there is no known cause, severely restricts or blocks blood circulation.
Before the Markas received the diagnosis, "we persuaded ourselves it wouldn't be HLHS."
But at 25 weeks of pregnancy, an echocardiogram revealed their baby did have HLHS.
The gravity of the diagnosis shook them to the core.
"It totally turned our lives upside down," Marka said. "You go from wanting to know what's the gender and what color to paint the nursery, to this serious diagnosis. It basically hijacked the rest of the pregnancy."
"It's the emotions" that hit hardest the families who receive an HLHS diagnosis, she said. "It may be your first born. It's supposed to be this amazing, happy time but it turns into the saddest."
When Marka learned what was ahead for her unborn baby—the heart surgeries, medications, special care that would be needed—she remembers the unfathomable questions that flooded her mind.
"How do babies go through open heart surgery?" she said. "It's just insane."
Learning her baby had a heart problem when she was 20 weeks pregnant was "a blessing and a curse," she said. "We were very lucky Altru caught it when they did. It helped us to plan and get our ducks in a row."
Without that early knowledge, some new parents take their baby home, thinking all is well, and days later the baby turns blue, she said. At that point, it may be too late to save the child.
Surgery at 3 days old
Willow Marka was born Sept. 13, 2013, weighing in at eight pounds.
"She was, by all appearances, a healthy baby," Marka said. "It was Friday the 13th."
On Monday, Willow had what would be the first of three open heart surgeries she'd undergo within three years.
After that first surgery, the Markas entered their daughter's hospital room.
"It was a huge room; there was no room to stand, it was filled with equipment," she said. "I thought, 'How is a baby going to live through this?' "
But Willow did live through several life-threatening challenges—even those that deepened her parents' and heart surgeon's worries about her survival.
Since the Markas brought Willow home, two months after her birth, they've provided special care, including administering medications and speech and occupational therapy. HLHS babies are at higher risk for developmental delays.
They also need to shield her from potential illness. A sign at their front door asks visitors to take precautions to protect the "heart warrior" who lives there.
"A simple virus could land her in the hospital," Marka said. "A cold could be life or death."
She and William have to carefully weigh the risk of taking Willow outside the home.
"It's a hard balance between the life you want her to live and making friends and going to parties, and keeping her here," Marka said.
"Watching her diligently becomes second nature. You're always one day away from tragedy."
'A crazy ride'
The Markas' ordeal closely mirrors that of Jay and Heather Turner of Northwood, N.D., whose daughter, Kendra Grace, was born with the HLHS defect.
"She was born April 7, 2015 at Mayo in Rochester (Minn.) and three days later she had open heart surgery," Heather Turner recalled.
The surgery lasted about seven hours.
"We got to see her that evening in intensive care," she said. "That was kind of overwhelming. Her chest was still open (but protected)."
It took three attempts and 10 days to close the chest.
Because the newborn would get too tired while nursing, a feeding tube inserted in her belly where it remained until late last year.
Kendra Grace underwent her second surgery in October 2015. Upon arrival at Mayo, she amazed the medical staff with her growth and outgoing personality.
"They said, 'Oh my goodness, she's huge,' " Turner recalled. Babies with HLHS are not generally as healthy-looking or lively at that age.
"They say that heart babies are the feistiest," Jay Turner said.
"It's like they're saying, 'We had to fight for our lives, we'll fight for everything," Heather Turner said with a laugh.
Kendra Grace has also received specialized in-home therapies to enhance her development.
As Heather Turner looks back on all her family has been through, she said, "It's been a crazy ride."
Both families say support of friends, relatives and their family-oriented employers was a critical factor in their ability to handle the challenges they faced.
"Honestly, it was the prayers" of people who knew Kendra Grace or learned about her through Facebook that helped bring them through the tough times, Heather Turner said.
"It was amazing the support we received," she said. "Friends would come over and clean my house when I was too exhausted. They mowed our lawn. People brought meals to our home."
The community also supported the family monetarily. Fundraising events were hosted in Northwood and Larimore, N.D., to benefit the family who, at the time, was new to Northwood.
"We were blown away by the generosity," Heather Turner said.
William Marka's employer was very supportive, Cassie Marka said, and her employer gave her a month off, with pay, to go and live in Boston where Willow underwent her third heart surgery. Her mother quit her job to care for Willow at home while Cassie and William were at work.
With the most serious obstacles behind them, Turner and Marka families want to increase awareness of heart defects and encourage expectant mothers to get prenatal care and screening.
They also want people to understand that "amazing research" is offering hope to families affected by CHDs.
"We want people to know this can happen to anybody," Heather Turner said. "We don't have any history of this in our family."
Most important, though, is getting prenatal care, she said. "Ultrasounds can save lives."
It's important for Cassie Marka that families affected by CHDs realize there is hope.
She and her husband, William, credit Altru medical staff with lifting their spirits at a difficult time, but that's not always true.
"(They) were very optimistic from the get-go; they said there's so much that can be done now," she said. "I know some hospitals give a grim or pessimistic feeling to parents, that there are no options, or parents are made to feel there is no hope."
The first surgery Willow had was "particularly hard—she had a stroke, hundreds of seizures, paralyzed vocal chords—so many times I thought, 'There's no way,' " Marka said of her baby's chances of survival. "At those times I so wanted hope."
That's her mission now, to give hope to other families who are going through similar challenges and the knowledge that their babies can survive and thrive.
"Willow is living proof of that."
Like any mother, Heather Turner wants her daughter to live "a happy, normal life," she said. "She probably won't be an Olympic athlete but, hey, I wasn't ... We're teaching her to live life to the fullest."
The experience of having a child with HLHS "has changed our family," she said. "It's changed our outlook and our perspective on life. Why get upset about things? We've learned to let the non-essentials go and we've learned what's really important."
That seems to be true for the Markas too.
"We are so lucky; despite the things we've gone through," Cassie Marka said. "We know people who never brought their kid home."
The experience with Willow, ultimately, has been an unexpected blessing.
"She is supposed to be here, and she supposed to be exactly who she is," Marka said. "She keeps life light and focused. I don't know how I'd have ever learned that without her. I wouldn't trade it for the world."