(EDITOR’S NOTE: This is a NDAD archive article from 2013. Learn about the new fundraiser on Sept. 30, 2014, for Willow Marka, and how you can help, at http://www.ndad.org/fundraisers.asp or at http://www.facebook.com/ndad.nd)
By Mike Brue
GRAND FORKS — Cassie and Bill Marka say they’ve learned a lot about themselves and about life these past five weeks in Rochester, Minn.
What the Grand Forks couple, both 27, didn’t at all anticipate: so many of the lessons are coming from their new baby.
Willow Marie Marka has shown plenty of heart for an infant born with one so incompletely formed.
“She’s so remarkable,” Cassie said, in a recent telephone interview, her voice cracking with emotion.
“You’d think that these babies aren’t going to know much, that you’re going to have to teach them,” the proud-but-anxious mama said. “But she’s been teaching me.” And husband Billy.
From Willow, born at the Mayo Clinic complex Sept. 13 with a rare congenital heart condition called hypoplastic left heart syndrome (HLHS), there have come lessons about strength.
And about bending when it appears you’ll break — much like the tree for which baby Willow is named.
“You can see the attitude that she has already,” Cassie said. “You can see the personality that she has. She’s so tough. We’re so proud.”
And lessons about the fragility of life, its sometimes roller-coaster ways – and its potential to produce what some might even venture to call miracles.
“She’s been through more in the first month of life,” Cassie said, “than half of us will ever have to endure.”
And there continue to be lessons about the importance of letting go of a need to control circumstances that can’t be controlled anyway. Or, at least, about the importance of trying.
Billy Marka, Cassie’s personal Rock of Gibraltar, has urged that very thing himself, even when he concedes he’s wavered a few times underneath his normally laid-back reserve. “We have to put our trust in other people, because she hasn’t given up,” he said about Willow. “We have to put her in the place and the spot that’s the best to take care of the problem.”
It’s been a tougher lesson to stick for Willow’s mom, even though she clearly understands its short- and long-term value: “You have to let go and trust in the situation, in people – friends and family.” And the medical professionals treating Willow , Cassie added. “I’m learning to let go of some of the control that I felt I need.”
BENEFIT, COMMUNITY SUPPORT TO BE ‘A HUGE HELP’
While Cassie Marka remains with Willow in Rochester today (Oct. 19), Bill Marka will join friends, family and other well-wishers at a benefit of support. From 3 to 8 p.m., all the proceeds raised from a silent auction, bake sale and loaded baked potato feed at the East Grand Forks (Minn.) American Legion will be used to help the Markas with medical and related expenses arising from Willow’s plight.
The Markas nixed the idea of a benefit when first approached, telling organizers thanks but no thanks. Despite the expected financial burden, Billy and Cassie said they didn’t want to give any impression they were seeking money or handouts.
Organizers came back to them a second time and said they were going to hold the benefit anyway.
“They’re amazing people, willing to help anyone and everyone,” said Jenny Milling, a friend and Greater Grand Forks softball teammate who also is the Marka benefit’s designated chairperson. “We need more people like them in the world.”
“Obviously, we’re super appreciative and we’re very grateful,” Billy said. “It’s just tough to put into words how awesome it is. . . . It’s just incredible – to help out other people when, in some cases, you don’t even know them enough and you’ll never be able to thank everybody enough for what they’ve done. . . . We want all our attention to be helping Willow, but it’s going to be a huge help.”
Through the support of community, family and friends, “we’ll be able to get through this, and it’s huge,” Cassie said. “And we’re really thankful, and proud, and happy about that.”
Some of the hardest lessons in Willow’s fledgling life journey began several months before her birth, when prenatal tests first hinted at, then revealed the serious scope of her heart woes.
Her surgical itinerary was more or less outlined by the time of her birth, starting with open heart surgery just days after her arrival. Sept. 16’s to-date successful operation marked the first of three planned open heart surgical procedures during the early development years of her life. They’re intended to help her survive HLHS, which provided her tiny heart with a severely underdeveloped left ventricle.
The second open heart surgery tentatively is due in about two to five months; the third, in anywhere from two to six years, ideally before Willow has a growth spurt.
After all of that, the Markas know, Willow probably will need a heart transplant; most children born with HLHS do. “They’re trying to make her stronger,” Billy Marka said, “so they can try to prolong the life of her heart as long as possible.”
It’s what the Markas didn’t anticipate that has challenged them most.
“My biggest hurdle,” Cassie said, “is you get this extraordinary, absurd news that your baby is going to have open heart surgery . . . and you spend weeks trying to comprehend why and how. We were sort of prepared for surgery — but everything that came after?”
Following surgery, Willow has faced life-threatening challenges that so far have prevented her a move from a Mayo cardiac intensive care unit. She’s had a collapsed lung. Pneumonia. Sepsis from an infection. She was under the threat of kidney failure and, for a time, faced the increased likelihood of a brain bleed.
“You’d wake up and you’d think, ‘What today?’ “ said Cassie, recalling how she and her husband lacked an opportunity to hold Willow for most of her first month of life. “You’d try to establish a plan . . . but there’s no preparing for anything. . . I’d totally lost control of the situation. . . .You’re helpless. You’re at the mercy of God and the medical staff.
“I’m kind of a control freak. . . . This was not one of those (control) experiences at all.”
Yet, Willow has come through each time.
And each time a new challenge emerges – with a new worry for her already anxious parents, who have seen their baby daughter uncomfortable and in pain.
“What she needs now,” Cassie said, “is to eat in order to grow.”
Willow hasn’t been able to eat on her own. This past week, the infant failed a swallow test and was aspirating. She faces new surgery to place a gastrostomy tube – also called a “G-tube” – through her abdomen to provide life-sustaining nutrition directly into her stomach. The surgery is scheduled for Monday, Oct. 21.
“Stinks,” Cassie wrote, summarizing the newest challenge to her friends and family this past week, “but explains why she hasn’t been eating well. Just want my poor baby to have some peace, for once.”
Friend Jenny Milling says Cassie “is a lot more positive about it than I’d ever be. . . . She said no matter what, Willow’s always going to be loved.”
A PREGNANCY OF SURPRISES, CONCERNS
The year 2013 was expected to provide the Markas with a few lifelong memories, even before they knew Willow Marie had been conceived.
With Billy Marka working as a carpenter for A&L Siding, Cassie Marka received a juris doctorate in May from the University of North Dakota School of Law. Then, she passed the North Dakota bar exam in late July. That assured a third accomplishment: her hiring by Zimney Foster P.C., the law firm in Grand Forks where she had been an intern for three years.
“She was relieved,” Milling recalls of Cassie’s news about passing the bar. “I don’t think it actually sunk in for her yet. I think she was like ‘ughhh . . . one thing out of the way. The most important thing is Willow right now.’ ”
Cassie achieved her educational dream in her hometowns. Born in Grand Forks, she spent much of her youth as one of the East Grand Forks Knopps. The second oldest of five siblings, she attended Sacred Heart and then “East Side” public schools before her family moved to Owatonna, Minn., south of the Twin Cities, after she finished the seventh grade.
Among the classmates Cassie met during her first year in Owatonna was Billy Marka, a native of nearby Faribault, Minn. — “kind of a bad boy” who, she later learned, had some interest in her that was not returned, she chuckled. They had little to do each other for the next few years.
By 11th grade, though, Billy had made bigger priorities of football — as an offensive lineman and middle linebacker, and baseball, as a catcher. In fact, Marka made the all-state football team. Cassie played volleyball, girls hockey (as a forward) and softball (as a shortstop).
By the time they graduated the following school year, Cassie and Billy each had been chosen to be a team captain – Cassie in hockey, Billy in football. “We took our responsibilities to athletics very seriously,” Cassie recalled.
And they also had become a seriously “inseparable” Owatonna High couple, too, having started dating during their junior years.
“It’s cheesy and a cliché to say it, but he’s always been like a best friend,” Cassie said of Billy. “He can always make me laugh. . . . He continues to keep things light and keep things in focus. . . . I mean, it’s his solid purpose just to make me happy, and he’s been very determined to help me do that for the last 11 years.
“I know he’s going to do that for Willow, too, which makes me really happy.”
For Billy, he said, his strong attraction for Cassie included her oft-demonstrated love for family and friends, and her strong work ethic, particularly her drive to complete whatever she’s started.
So after graduation, when Cassie Knopp moved to Grand Forks to attend UND with intentions of becoming a lawyer, Billy had no doubts she would fulfill those intentions. Billy moved north, too, living the first school year in nearby Thompson, N.D., while attending Northland Community and Technical College to advance his carpentry skills.
The following year, after Billy had finished school and while Cassie was a UND sophomore, the pair became engaged. They married on Aug. 30, 2008.
The Knopps hoped to begin a family – and tried, for “a good four years,” to conceive, Cassie said. A pregnancy eluded them – so much so that the couple considered adoption, in-vitro fertilization and other means. Other times, they tried only not to think about it.
Then, early this year, on Jan. 8, Cassie’s home pregnancy test was positive. It was the first time in four years of trying that such an outcome had occurred.
“It was just amazing. I was in shock, really,” she recalled. “At that point I didn’t believe I could have kids.”
“It was awesome,” recalled Billy, who received the news during a poor-reception cell phone call during a job he was on in Larimore. “It was kind of surreal. I don’t know if I’d say I was in denial. Until we saw the first ultrasound, that’s what made it real that we actually were – just because we had been trying for so long.”
At 19 weeks, thanks to that first ultrasound during an Altru Health System appointment, the Markas learned their baby was a girl.
“That’s also when we found out that there may have been something abnormal,” Cassie recalls.
The fetal ultrasound failed to produce a good, clear image of the heart. “I was immediately worried,” Cassie said, “that it was more than just not getting a good picture.”
Nonetheless, the Markas said, the four weeks between ultrasounds were among the best of their marriage. “We knew she was a girl,” Cassie said. “We could start planning. We could start painting her room.” They already had the name picked: Willow.
Then the 23-week ultrasound provided sobering news: something definitely was abnormal about the fetal heart. The images did not reveal all four chambers. There was a hole.
The Markas were referred to Sanford Health in Fargo and its pediatric cardiologist, Dr. Justin Horner, but an appointment wasn’t possible for several weeks.
“Those were the hardest weeks of our lives,” Cassie recalled. “I was just sad. I was just really, really sad. We had worked hard for a baby, and we had not envisioned what it was going to be like” if problems occurred. “On top of that, you don’t know what the problem is, so we didn’t know how to prepare for it.”
The Markas’ own research during their wait revealed a vast number of possible congenital heart issues – some manageable, some not, some that usually resolved themselves on their own. In fact, the Markas concluded they had reason to be more encouraged about their baby’s outlook.
Cassie’s sister in the Twin Cities was the first to bring the rare hypoplastic left heart syndrome to the Markas’ attention, after her sister’s neighbor, an neonatal intensive care unit nurse, mentioned it. The Markas felt there was little chance that would be their little girl’s problem.
Cassie also recalls an attorney she spoke with, a woman whose own child had open heart surgery at age 2 to deal with a congenital heart defect. “I remember saying to her, ‘I cannot imagine my 2-year-old having open heart surgery.’ . . .
“Then we found out that Willow would have not one (surgery), but three.”
For the Markas, the news at their Fargo appointment was “heart wrenching.”
“We had been working our way back into a positive and hopeful place,” Cassie said, “only to be knocked on our butts again.”
TRYING TO ‘RISE ABOVE IT’
Dr. Horner’s high confidence in Mayo Clinic to handle the matter, and his prior working relationship with Mayo’s Dr. Harold Burkhart, a thoracic and cardiac surgeon, gave the Markas a renewed boost of encouragement about Willow’s prospects, Cassie said. Horner “was a godsend. . . .It was the first time we were kind of able to know what she had and also feel semi-confident about who would be caring for her.”
The next three months included a trip to Rochester to meet Burkhart and other key members of the medical team that would handle Willow’s birth and surgical care. The Markas learned more about HLHS, the series of heart surgeries planned and other related expectations. The plan: labor would be induced on Sept. 11, and the baby’s first surgery would follow several days later.
The Markas were blessed, Cassie said, to learn about Willow’s condition prenatally. Still, the mom-to-be was in constant worry “trying to imagine what things would be like. . . . It totally hijacked the pregnancy.”
“As long as she was within me, she was safe,” Cassie added. “This whole issue only occurs once they are born.”
Meanwhile, Cassie was studying for the North Dakota bar exam, which she took at the end of July.
By the time they marked their five-year wedding anniversary Aug. 30, the Markas had become new guests at Rochester’s Ronald McDonald House, the noted “home away from home” for families whose children are receiving medical attention. “The Ronald McDonald House is beautiful,” Cassie said. “They do a really great job in Rochester and we were really thankful to be there.” At the same time, their presence among other parents with medically challenged children was quite bittersweet. Their stay at the house reinforced that their Willow’s dilemma was all too real, which, Cassie concedes, at times left her “angry and scared.”
“There are so many babies born every day. Why here? Why did she have to go through this? It just seemed so – unnatural. I just wanted her to have the perfect life, free from any pain. . . . Everybody said she’s going to be ‘special.’ But I said, ‘Why can’t she be normal?’”
After Willow’s birth, the couple was able to spend rewarding quiet time with her, holding her during the several days before her scheduled open heart surgery. Several more weeks passed before the opportunity to hold their baby girl returned. There was no certainty they’d get another chance.
Recently, though, there have been more opportunities to bond, the parents say.
Billy “stayed with her last night, and he didn’t put her down,” Cassie said more than a week ago. “She’s a daddy’s girl already. She hears his voice and looks for him.”
As for Willow’s mom? “I feel like a chameleon. That’s the only way I can describe it,” Cassie said. “I’m dependent on how she’s doing. She has a good day, then I do. I feel like she’s my other half. My sanity. My overall general wellness is dependent on how she was doing.”
So, along with lessons from her infant daughter, Cassie is trying to accept the message from friends and family who have sent Willow items that feature images of giraffes. One item, a giraffe-covered blanket, remains frequently in their baby’s grasp, Cassie said.
According to the new mom, giraffes are recognized for their grace, and even more for their physical ability to rise above the negative events around them.
“It’s a theme for any family who’s going through medical issues — just trying to find the ability to rise above it and cling to whatever it is, whatever you can, whoever you can,” Cassie said. “Willow’s definitely done that. “
Teaching, once again, by example.
“I would never trade her for a baby with a healthy heart in a million years,” Cassie said. “She’s just so unique.”
Mike Brue is communications director of NDAD, a sponsor of the Saturday, Oct. 19, benefit for the Markas.
Learn more about charitable nonprofit NDAD and the ways it helps people with disabilities and health challenges at NDAD.org or by calling (800) 532-NDAD (-6323). NDAD has offices in Grand Forks, Fargo, Minot and Williston.