Parents of baby with rare, life-threatening disorder have one simple hope: 'For him to be happy'
Danielle Kraus and Derek Jensen of Park Rapids, Minn., had no idea their son Henry would be diagnosed with neonatal Marfan syndrome, a rare and serious condition.
PARK RAPIDS, Minn. — Henry Jensen is a typical baby in that he has his first few teeth coming in, likes to look at books and is thoroughly entertained by the antics of his older sister.
But what this eight-month-old has that few others do is a life-threatening condition that will forever change his and his family’s lives.
Henry was diagnosed shortly after birth with neonatal Marfan syndrome, a rare, hereditary disorder that affects the body’s connective tissues, thus impacting development of the heart, lungs, skin, bones, joints and eyes.
There is no impact on intelligence, according to the Marfan Foundation.
Henry’s parents, Danielle Kraus and Derek Jensen, had no idea their son would have health problems.
It’s a reality they are still processing now that Henry has already undergone surgery on his eyes and, most recently, his heart.
“For me, I think it's just … one day at a time,” Kraus said, her husband quickly adding, “More like a minute at a time.”
There are approximately 200,000 cases of Marfan syndrome in the U.S. every year, but many go undiagnosed because characteristics vary in severity and sometimes don’t become evident until later in life.
The diagnosis at birth is much less common, and the prognosis is more severe.
As an indication of rareness, a Facebook group for neonatal Marfan syndrome has only 70 members worldwide.
Even though Henry's journey is just beginning, he's already given his family some valuable perspective.
“It’s definitely not what we had planned for or pictured, but in some ways, it’s just so much more, in what he’s taught us,” Kraus said.
'The longest night'
Kraus works as a paralegal for a law firm in the Detroit Lakes area, while Jensen is a financial advisor.
The two started their family five years ago with the birth of Evelyn, or Evie for short, who they describe as a lover of clothes and fingernail polish, but also digging in the dirt and catching frogs.
Kraus said with Henry, her pregnancy was healthy, uneventful.
After his birth at a Detroit Lakes hospital, the parents didn’t notice anything unusual about their son at first.
When the baby was taken to be cleaned up and assessed, Jensen asked a nurse how Henry was doing.
“She didn't answer right away and ... that was scary,” Jensen said.
Soon after, they were told their son’s wrinkled skin, long fingers and other characteristics might be a sign of Marfan syndrome, something they’d never heard of.
“I don't know that I took in or understood hardly any of it. Your mind's just concentrating on your child,” Jensen said.
During the assessment, Henry started having trouble breathing, and he was transferred to the neonatal intensive care unit at Sanford in Fargo.
Just hours after giving birth, Kraus was discharged from the hospital so she could be with Henry.
“Longest drive ever, up to Fargo,” Jensen said. “And the longest night, not knowing what to expect,” his wife added.
'Do not lose hope'
After the medical team stabilized Henry and ran genetic and heart tests, the neonatal Marfan diagnosis was confirmed.
Eye surgery would be needed just five weeks later to reduce fluid buildup. Then, Henry had to have a feeding tube placed because he wasn’t able to get enough nutrition orally.
In May, doctors at Mayo Clinic repaired two valves in Henry’s heart, and more surgeries are anticipated down the road.
With each challenge, Henry has persevered.
“I feel that he's kind of an old soul. You just can tell ... the wheels are always turning,” Kraus said.
Early on, the parents heard a dire prediction of a life expectancy of one to two years for Henry.
They’ve read about children with Marfan who’ve been able to graduate from high school, but many more who did not make it that far.
But when the family, by chance, met another family with a boy with the same condition, their spirits were lifted with news of ongoing research and clinical trials.
“They basically said, ‘Do not lose hope,’ and that was huge,” Kraus said.
Now, the focus is on helping Henry get stronger through physical and occupational therapy and monitoring his condition through regular visits to his pediatrician and a half dozen specialists.
Kraus and Jensen’s family members are helping with it all, and their employers have been flexible, given the challenges the family is facing.
Their hopes for their son are simple.
“For him to be happy. Just to be loved and hopefully make some friends,” Jensen said.
For anyone interested in learning more about Marfan syndrome or who would like to donate to further research, the Marfan Foundation is a good place to start, Kraus said.
An earlier version of this story incorrectly referenced the last names of three of the four family members.