Matters of the heartIt’s a difficult thing for parents to go through – expecting a healthy baby, only to discover when the bundle of joy arrives that there are serious, and completely unexpected, complications. Four area families know only too well the heartache of having a child born with a congenital heart disease.
By: Jo Colvin, Alexandria Echo Press
It’s a difficult thing for parents to go through – expecting a healthy baby, only to discover when the bundle of joy arrives that there are serious, and completely unexpected, complications.
Four area families know only too well the heartache of having a child born with a congenital heart disease. In some cases, the families are celebrating successful surgeries and medical treatments, grateful their babies survived and are healthy.
But some parents aren’t so lucky – their children didn’t survive. And they struggle every day with the pain and loneliness of having their little ones’ lives taken by matters of the heart.
What is a congenital heart defect?
A congenital heart defect (CHD) is a structural problem with the heart that is present at birth. It results when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant.
Defects range in severity from simple problems, such as “holes” between the chambers of the heart, to severe malformations, such as complete absence of one or more chambers or valves.
Treatment can include medicine, surgery, other medical procedures and heart transplants, depending on the severity of the defect.
It’s the little things
It was touch and go at first, but Adam and Britt Duchene of Villard are lucky. Their third child is going to be fine.
When Emma was born on January 19, she had trouble breathing. She was put on oxygen and a specialist was called in. He discovered two holes in Emma’s heart and a coarctation of the aorta, a narrowing of the aorta, the major artery leading out of the heart.
Emma was transported by LifeLink to Children’s Hospital in Minneapolis two days after she was born. She was put on a respirator and four days later underwent surgery to “cut out” the narrow portion of her aorta and “put it back together.”
The surgery was successful, but when she was taken off the ventilator, serious complications ensued.
“It’s kind of scary when you think everything is fine and you come back and 10 or 12 doctors are frantically working,” Adam said of Emma’s near cardiac failure.
After removing the ventilator a second time several days later, Emma regained her strength and finally went home with her parents, sister, Abby, 5, and brother, Luke, 3, more than a month after her birth.
Six days later she developed respiratory syncytial virus (RSV), which causes infection of the lungs and breathing passages. The illness resulted in a week and a half back in the hospital.
Looking at Emma now, it’s hard to tell she has ever had a health issue. The chubby, smiley girl is right on track for growth and development.
Doctors say her prognosis is good. The holes in her heart have closed completely and the surgery successfully repaired the narrowing of her aorta. At this point, she will visit doctors every two months so they can monitor her progress. There is a small percentage of coarctations that come back, but it doesn’t appear as though it will be in her near future.
The future is something the Duchenes will never take for granted again.
“After you go through this it changes your aspect on life – what matters and what doesn’t,” Adam said. “You appreciate things more.”
“It the little things that didn’t matter before,” Britt agreed. “The first smile, the first step…all the firsts are a bigger thing. It’s something we could have missed.”
A special birthday
Riese Kluver just celebrated her golden birthday – she turned 7 on May 7. It’s a milestone no one thought she would ever reach.
Riese, the daughter of Lindsay and Robb Buttweiler of Alexandria and Brent and Steph Kluver of Plymouth, was born with hypoplastic left heart syndrome (HLHS), a disease in which all the structures on the left side of the heart are severely underdeveloped. In addition, the right side of her heart had only one valve, which was leaking.
In her 7 years, Riese has had six heart surgeries and numerous other procedures, including the insertion of a pacemaker, which she will always have.
Although Riese’s heart is functioning, it is on the level of an “elderly person.” Every day she takes five medications.
The spunky, talkative 1st grader at St. Mary’s School in Alexandria tries to keep up with classmates, but she realizes her limitations. She has to stay out of the sun because of her medications, she can’t go outside if it’s above 80 degrees or below 20 degrees, and she can’t ever push herself physically.
In January, Riese was granted a wish by the Make-A-Wish Foundation. She went on a five-day Disney cruise to the Bahamas, where she met all the Disney characters and her favorite princess, Belle. The family opted to have her wish granted now while Riese is in good health. They don’t know when that could change.
“She’s doing good right now. You would never know anything is wrong,” Lindsey said. “But we never really know. We go day by day and month by month.”
At this point, Riese is doing remarkably well, considering the seriousness of her defect. Even doctors are surprised she is not having more complications. But they also know her future will include additional surgeries and eventually a heart transplant.
Until then, on each birthday, the celebration will be bigger and better.
“She is definitely a miracle in the eyes of everyone on her medical team and family and the community,” Lindsey concluded. “We never thought we’d get here.”
Minute to minute
Hazel Heidelberger rang in the New Year on January 1, 2010. Her parents, Ryan and Angela, both 2004 graduates of Jefferson High School in Alexandria, thought they had a perfectly healthy baby – until 24 hours after she was born.
Then her pulse began to race and her oxygen levels got dangerously low. Hazel was flown to Rochester (the Heidelbergers currently reside in Mankato) where she was diagnosed with HLHS.
She made it through two surgeries, but lost her battle for life on January 14.
“It’s a minute to minute thing,” Angela said of how they are coping with their daughter’s death. “It’s very lonely.”
That feeling of having no one to turn to prompted Angela to start a Minnesota chapter of It’s My Heart, an organization dedicated to raising awareness of CHD. The group also provides a place for those who have experienced the difficulties of having a child with CHD to meet, share stories, encourage each other, and get information regarding the disease.
It’s My Heart of Southern Minnesota became official with the state on April 26, with Angela Heidelberger serving as president.
In a better place
Unlike most people who have children with heart problems, Jesse and Hannah Ross of Miltona were prewarned. At a routine ultrasound at 20 weeks, doctors discovered that the Ross’ unborn child had HLHS.
“We aren’t really sure knowing beforehand was better or not,” Hannah said. “We think it was better because we knew what to expect and weren’t shocked when they whisked her away, but on the other hand, we worried a lot before she was born.”
Kali was born April 12 at Abbott Northwestern Hospital in Minneapolis. She was immediately taken to Children’s Hospital and prepped for surgery.
“I didn’t get to hold her, but I got to hold her fingers for a couple minutes before they took her away,” Hannah said.
Shortly after she arrived at Children’s, the Rosses heard more bad news. Kali’s condition was much worse than expected because her veins and arteries that went from her heart to her lungs were underdeveloped.
Doctors determined that even if she made it through the first surgery, her heart was in such bad shape that her chances of surviving were slim, so they didn’t recommend it.
“Kali’s doctor told us that they almost never recommend not doing anything, but her case was rare in that she had multiple things wrong that would be near impossible to fix,” Hannah said. “We made the hard decision not to do the surgery and just enjoy the time we had with her.”
It was a heartbreaking decision, but the couple knew the surgery would “add to her suffering” and felt that letting nature take its course was the best option.
On April 18, at just 6 days old, Kali Ross passed away in her daddy’s arms.
The Ross’ 2-year-old daughter, Madison, has helped ease the pain of her sister’s death, keeping her parents busy and making them smile. The couple’s friends and family have also been a big help in their time of sorrow, and they are “doing good, considering the situation.”
“We do have our bad days,” Hannah concluded, “but remember that she is in a better place where she isn’t in any pain.”
Ways to help
• The Ross family – A spaghetti feed and silent auction are set for Saturday, May 22 at the Elks Lodge in Alexandria from 3 to 8 p.m.
• The Duchene family – An account to help defray medical costs has been set up at Bremer Bank in Alexandria. Make checks payable to Emma Duchene Benefit Fund and send to Bremer Bank, Emma Duchene Benefit Fund, 2210 Highway 29 South, Alexandria, MN 56308.
• It’s My Heart, Inc. – Southern Minnesota Chapter is organizing a “Walk for CHD” to be held Saturday, September 11 at the track at Jefferson High School in Alexandria. Details will be published when they become available. To donate or support the event, contact Angela Heidelberger at (507) 779-2489 or by e-mail at firstname.lastname@example.org.
A Facebook page has also been set up; visit the website www.facebook.com and do a search for “It’s My Heart of Southern Minnesota.”