As she sauntered down the sidewalk on the Marquette University campus, Maureen “Mo” Jurgens easily blended in with the other young students. Tall, very slim with flowing blond hair, she confidently maneuvered her way around the campus, obviously at home in the college environment.
Seemingly predestined to attend Marquette as her parents, Kate and Brian Jurgens met while students at Marquette, as did her grandparents, Margaret and James Sankovitz, Mo likely had blue and gold blood coursing through her veins at birth. However, the 18-year-old admitted she often didn’t allow herself to dream much beyond the present, not knowing if she’d make it to college.
Dreams begin to take shape
But as she begins this next stage of her life, Mo is allowing herself to think beyond, dreaming of life as a pediatric nurse, helping young people much like herself.
“When I graduated from eighth grade, it was sort of sentimental like I made it and I’m still here. Same with my high school graduation, but I didn’t even know if I’d make it to college,” said Mo in an interview with Catholic Herald Family. “I met a girl who had a similar heart procedure and she passed away. I could die, as I’m prone to aneurysms, or it could burst so there were times I wasn’t thinking about the future. But now, since my last surgery, I’m pretty stable and while I haven’t really thought about the future before, I definitely know I want to be a nurse.”
The first 18 years of Mo’s life have been filled with countless doctors’ visits, trips to the emergency department, medical testing and 27 surgeries.
Through it all, however, Mo and her family, including brothers Charlie, 20 and Tim, 17, and sister, Brigid, 12, members of St. Robert Parish, Shorewood, have relied on support of family and friends to help them cope, but most of all, they’ve relied on their Catholic faith.
“God has brought me out of anesthesia 27 times,” said Mo, noting, “there are definitely times when I don’t understand and while, yeah, my life kinda sucks, but it could be worse. As I’ve gotten older, I have an understanding of how God works, and I’ve been exposed to worse problems.”
Faith is greatest gift
Her mom has a similar outlook.
“Faith is one of the greatest gifts God can give us. It is with faith that all things are possible,” wrote Kate in the afterward of “Mo: A Loeys Dietz Syndrome Memoir,” published last year. “Somtimes possible in a way we don’t understand and wonder why we are still disappointed in what we did not gain or receive and at other times in ways we could never believe would work. Faith is the answer sometimes when there is no other answer.”
Mom’s dreams become reality
Her pregnancy with Mo went well, Kate told Catholic Herald Family during an interview in her Shorewood home, although she looks back on strange, recurring dreams of a baby born with a cleft palate or heart defects.
After a seemingly easy birth, Kate, a registered nurse who taught childbirth classes and worked in the Neonatal Intensive Care Unit at St. Mary Hospital, was the first to see her infant daughter’s cleft palate.
After examining the cleft, Kate more closely examined the tiny baby’s face and noticed eyes that were widely spaced and a recessed chin. She had a broad nose and her hands, while fisted like many newborns, did not have normal spacing between the fingers and the thumb.
Becoming more concerned, Kate, the clinic nurse case manager for high risk OB patients at the Columbia St. Mary’s OBGYN residency clinic, said she unwrapped the blankets around the baby who had been placed on her chest, saw one of the feet curved slightly, while the other had toes and heel turned upward.
“Rocker bottom foot,” resonated in my neonatal intensive care intellect. I nudged it away and quickly rewrapped her,” wrote Kate, describing the early moments of Mo’s life when Kate vacillated between new mother and neonatal nurse, knowing the potential severity of her child’s condition.
“My mind traveled to the previous week when I had last staffed the NICU. I cared for a baby who had been diagnosed with a genetic syndrome that was incompatible with life – trisomy 18. His family had chosen to leave the hospital without the baby and was to be notified when he died. Much of my PM shift was spent holding and rocking that baby…. He, too, had had a cleft of the soft palate, contractured hands and a ‘rocker bottom’ foot,” wrote Kate.
Lifelong medical journey begins
While Kate and Brian soon learned that their baby was not terminally ill, as was the baby she had cared for, they also were on the beginning of a lifelong medical journey with Mo.
Knowing that early intervention was critical, Kate began calling insurance companies and scheduling doctor appointments the day she was discharged from the hospital to correct Mo’s feet and mouth.
By the time Mo was 4-months old, Kate said she and Brian felt confident that their daughter was on track mentally. “We had reached this acceptance that she had things we had to fix,” said Kate, explaining that the years that followed included surgeries on her hands, feet, legs, neck, back, heart and ears.
Cause still unknown
As the corrective surgeries continued, the family and doctors continued unsuccessfully to search for the cause of Mo’s issues.
Her health issues multiplied in 2004 and Kate was particularly concerned about Mo’s high heart rate. It was about this time that the words, “connective tissue disease” were used for the first time and the family was also learning that an aneurysm was threatening Mo’s heart; open heart surgery was a real possibility.
Soon after, Kate was referred to a physician from Johns Hopkins University, Dr. Hal Dietz.
In less than 48 hours, Dietz replied to Kate by email, “Your daughter’s aortic size is quite alarming and I strongly suggest surgical repair in the immediate future.”
Kate saw the email late one evening, and before she replied the next day, her phone rang at 8 a.m. It was Dietz telling her that he and a fellow scientist, Dr. Bart Loeys, had just discovered a new genetic syndrome that fit Mo’s characteristics.
Mo became the first person in Wisconsin and was the 30th in the nation to be diagnosed with the genetic mutation that has come to be known as Loeys Dietz Syndrome.
Heart surgery needed immediately
Dietz’s call also came with a warning that 9-year-old Mo needed open heart surgery immediately.
“I don’t want to frighten you, Mrs. Jurgens, but I diagnosed a young child recently on a Monday. The dilation of her aorta was much smaller than your daughter’s. We scheduled surgery for the next week. She died on the following Sunday before ever making it to the OR,” Kate wrote of her conversation with Dietz.
Alarmed, the family prepared for the most serious surgery of her life with prayer, as they had done so many times before.
New fan on their team
This time, however, they had another person praying for them, too. Steve Novak, then a forward on the Marquette basketball team, had learned of Mo through a friend.
He called Kate one evening after basketball practice and arranged to meet Mo the next day.
“I was told by a friend who knew the Jurgens family that there was a little girl named Mo who was a huge fan of mine and was about to undergo a very serious surgery,” Novak told Catholic Herald Family in an email. “We share almost the same birthday and I was told that was the first thing she recognized about me in my bio. She felt we had a strong connection before we ever met,” he said, explaining Mo would wear Novak’s #20 jersey into surgery because it gave her strength.
“When I heard this, I knew I had to meet her, mainly at that time, because I knew she was about to have a scary surgery and that if she was wearing my jersey for strength that maybe I could give her a few words of encouragement and comfort,” he said, adding he has a sister the same age as Mo.
He first visited the Jurgens home on Valentine’s Day in 2005 and in the years that have followed, their friendship has blossomed.
Novak, currently a member of the Toronto Raptors, has played for the New York Knicks, Dallas Mavericks, San Antonio Spurs and Los Angeles Clippers after being drafted by the Houston Rockets.
“Over the years, we’ve become really close,” said Mo, noting that Novak has attended many of her theater performances and that she’s babysat for his 2-year-old son. Not only has he kept in touch, but he’s also helped raise funds for the Loeys Dietz Foundation, an organization formed in 2007.
Both draw from the friendship, according to Novak.
“After meeting her, it was very obvious to me that she was someone that I could learn quite a bit from. During that time, I was going through the most difficult time in my life – college basketball and the training and commitment it took and the wear and tear it was putting on my body,” he described.
Yet, he said when he met Mo and saw what she was about to face, “but more importantly, what she already had, it made me take a big step back and look at my own life and realize that if she could look these scary surgeries in the face and never waiver in her strength, that I could be more fearless and not back down from any challenges.”
Relationship is a ‘blessing’
Novak, a member of St. Monica Parish, Whitefish Bay, said he believes God puts people in one’s life for certain reasons and “I think my relationship with Mo has been such a blessing.”
“She has always given me so much perspective on what it really means to be tough and what it means to overcome difficult ideas or times,” he said, adding she could have felt bad for herself, “but that’s not her personality.”
Mo’s health problems have kept her from activities like sports, something she initially struggled with. Instead, she has turned to theater and found an outlet for her outgoing, witty and self-described “weird” personality.
Since her most recent surgery in January, she and her mother describe her health as stable, although Kate said Loeys Dietz Syndrome tells a complicated tale.
“Connective tissue runs throughout the body – organs, muscles, blood vessels. You name it. It’s present. When it’s weakened and defective, it is bound to wear down, be stretched to its limits and sometimes break. Sometimes it can be repaired. Other times the science just hasn’t caught up yet and faith encircles one to carry on the healing,” wrote Kate.
Memoir written to help others
Recording their journey in the book was not only therapeutic for Kate, but she hopes it is something that will help other families facing similar health crises.
“Originally, it was me emptying my head,” said Kate of the writing. “But I wanted to write this story to pay tribute to Maureen and family and friends who have helped us get this far.”
Proud of her mom’s writing, Mo, who described herself as an avid reader, said she hopes the book, which is required reading for Marquette University senior nursing students and graduate level practitioner students in Dr. Norah L. Johnson’s classes, achieves its goal of raising awareness.
Mo also said she “wants to give a shout out to my dad,” a man of few words, she said, but someone “who’s always there for me. I’m definitely Daddy’s girl and while my mom does enough talking for both of them, my dad doesn’t say much, but when he does, he will put things in perspective.”
As she looks back on the medical journey she’s traveled, Mo, who initially said she wanted nothing to do with the health profession, is studying nursing.
“All through grade school, I said, ‘I’ve had enough of this,’” she said of medicine. “But as I thought about what am I good at, I started thinking that maybe nursing is the best thing because I know what it is like to be the patient.
“Even though I am not really big on science, if I can survive chemistry, I think I can be the best nurse because I have been on the other side.” Maryangela Layman Román, Catholic Herald Family Staff