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Born on Christmas Day

By Staff | Dec 23, 2008

AT JUST OVER 16 lbs. at nearly a year old, Sophie Bonnstetter is a happy, but tiny, bundle of joy for her father, Luke Bonnstetter. Sophie has already had one surgery to repair her malformed heart and is facing additional surgery in 2009. -- Algona Upper Des Moines photo

by Mindy Baker

Algona Upper Des Moines

ALGONA — She’s Daddy’s little girl and she’ll celebrate a very tough year at the West Bend Park View Inn with her family and friends this weekend.

Sophie Jaslene Bonnstetter was born on Christmas Day 2007, a tiny bundle of joy for her parents, Luke Bonnstetter and Danielle Benjamin. The entire family had gathered for Christmas and Sophie’s arrival was celebrated with style.

“Everyone was excited. She was born at 2:15 p.m. so everyone was here,” stated Luke.

The only indication there might be a problem with the baby was during the birth every time Danielle had a contraction, Sophie’s heart rate would drop, so the doctors at Kossuth Regional Health Center did an emergency caesarian section. A heart murmur was also noted, but Luke and Danielle were told that they just needed to keep an eye on it and that it was probably nothing to worry about.

However after bringing her home they noticed she was always breathing hard, and at Sophie’s one month checkup the heart murmur was still audible. Dr. Lampe and Dr. Doolittle referred the infant to a pediatric cardiologist to be on the safe side.

Another holiday, Valentine’s Day, Sophie had an ultrasound where it was discovered she had an atrioventricular canal defect.

An AV canal defect means that the center of Sophie’s heart didn’t form to create two chambers and the valves to pump her blood are in the wrong place. Untreated it is always fatal.

Sophie’s parents were told that surgery would be needed between six months and 4 years of age to treat the problem, and that the surgery should be put off as long as possible, as long as Sophie was gaining weight and doing well.

During the waiting period, Sophie needed to take monthly shots to ward off RSV, respiratory syncytial virus, a respiratory illness that would tax her lungs already struggling with fluid buildup from the canal defect. Additionally she was on a high calorie formula to help her gain weight.

The RSV shots cost $1,500 a month, with insurance only covering 80 percent. But that was only the start of monetary problems for the family. Because of the risk of getting sick, Sophie could not go to daycare, and Luke’s job with CDI in Forest City is directly tied to Winnebago as he paints the motor homes. “We’ve gone from 200 employees to 30, so a lot of people have been laid off,” Luke explained.

A month later Sophie had another ultrasound and it was found that the hole in her heart was bigger than originally thought.

“We decided to do the surgery then because she was still healthy and strong, not getting weak yet,” Luke explained.

Sophie was baptized on Sunday, May 4, and as soon as everyone finished eating, Luke, Danielle and Sophie headed to Iowa City, where they checked into the Ronald McDonald House. She had surgery on May 6 at 6 a.m.

“It was really hard to see her go into surgery,” said Luke. “The worst part about it is there is nothing I could do. I had to rely on the doctors to fix my little girl.”

The surgery took nearly nine hours and she was put on a by-pass machine twice. A post-surgery ultrasound showed one of the valves still leaking back and she had to be opened back up to fix that problem. The original estimate was that Sophie would be in the hospital for five to seven days.

The family spent 21 days in Iowa City. Another holiday — Sophie came out of recovery on Mother’s Day.

“She was in pediatric intensive care for 10 days, and that was hard too,” Luke said. “Trying to get her off the serious medications, alarms going off all night long, 10-15 different doctors and students doing this and that.”

His best memory of those first few days after the surgery was that an hour after surgery Sophie was able to hold his finger.

He and Danielle have postponed their wedding plans three times as first Sophie’s illness and then financial difficulties have sprung up. A date for 2009 was set, but the most recent doctor’s appointment has shown that one of the valves is still not working properly and will need to either be repaired or replaced with an artificial valve.

“My biggest hope is that they can fix it,” Luke stated. “If she gets an artificial valve she’ll have to spend the rest of her life on blood thinners and won’t be able to play sports. Plus as she grows she’ll need more surgery.”

Additionally, it means she has to go back on the RSV shots. Luke knows he and Danielle are lucky. Other than her tiny size — 16 lbs., 5 oz., with her one year birthday coming up — Sophie is a happy go-lucky child. She’s taking her first steps and beginning to speak words.

“She’s beautiful. She doesn’t look like anything is wrong. She’s happy and playful,” explained Luke. “She takes her meds daily just like its candy.”

The only problem is she’s outgrowing baby food and wants to eat what her parents eat, but the doctors want her to stay on formula so her stomach doesn’t have to work so hard to help her gain weight. She needs 9 month old pants for the length, but only 6 month pants fit her waist.

The first surgery cost nearly $300,000. The family has applied for state aid, but because when they first applied Luke and Danielle were both making good money they were denied.

They have only told family and a few close friends about the financial burden. His sister, mother and a family friend have all stepped up to help with babysitting so that Danielle could return to work at Pharmacists Mutual full time.

“Our church helped us out when we were at the Ronald McDonald House, and our family has been great,” Luke said.

However, Luke’s mother, Michelle Bonnstetter, has set up a medical fund for Sophie at Northwest Federal Savings Bank in Algona, and the family has a Care Pages Web site at: www.carepages.com/carepages/sophiejaslenebonnstetter.

One of Luke’s big worries is about becoming laid off as Sophie’s insurance is through his work.

“We’re still paying off for her birth,” he said with a smile. “It’s been rough, but we stay focused on Sophie.”