avatar

Hail to the Little Victors: Darren Xiangzi Kreps’ Story

erik krepsWe first learned about Darren’s situation in March of 2012. He was three years old and living in an orphanage in Shenzhen City, China. He’d been found as an infant in a local hospital waiting room with a note presumably from his birth parents indicating his birth date and that “We hope the kind people can help him.”

It was discovered that he had multiple congenital heart defects.  They were able to diagnose the problems in his region of China but couldn’t treat them due to the complexities.   It was determined that he had a very short life expectancy without surgical intervention.

Meanwhile we were here with one of the best children’s heart programs in the entire world in our back yard, at C.S. Mott Children’s Hospital.  Sandy – bless her soul – wanted to help right away, but I was more cautious and encouraged her to stop reading blogs.  Ultimately none of the objections I raised could offset the fact that he would die without help.  So we prayerfully began to take steps to see if we could raise funds to cover the exorbitant costs of international adoption and navigate the considerable red tape.

Sandy contacted several doctors to review Darren’s available medical records, including Dr. Edward Bove, whom we soon learned is an absolute legend in the field.  Dr. Bove reviewed his records free of charge and wrote an expedite request to get Darren here as soon as possible – a document that turned out to be vital in hastening along the adoption.

Sandy and our oldest daughter, Madeline, flew out to China in November of 2012 to bring Darren home.  When they returned three weeks later, the congenital heart center, on very short notice, scheduled an appointment to get Darren in for further testing.  They were even willing to see him the next day if we could have overcome the jet lag to get him there.

Among other testing, they did an echocardiogram, an EKG, x-rays, and a catheterization.  They consulted as a team, which was very reassuring to us, and determined that he was indeed operable.  We learned that Darren had multiple complex issues that very few surgical units in the nation are equipped to handle.  In fact, children with similar heart problems are apparently routinely referred to Mott from all over the country.  So, thankfully, due to the experience of Dr. Bove and his team, Darren’s combination of heart defects was nothing they hadn’t seen before.

Dr. Bove scheduled the surgery for two months later.  This was a blessing in that it gave Darren a chance to bond with his new family and adjust to a new language and country, and we also were able to see in that brief time that his health was indeed declining, which underscored the need for surgery.  His surgery took place on February 6.  He was in an induced coma for three days after that and stayed in the hospital 16 days all together, which was normal for his type of operation.  Sandy stayed with him the entire time.

Darren’s recovery was nothing short of miraculous.   It is so incredible to see Darren running, laughing, playing, (and even complaining) without turning blue and losing his breath.  He will need at least one more open heart surgery to replace a conduit when his heart outgrows it in five or six years and also perhaps to fix a pathway that’s still a little too narrow.  Under current technology he’ll need his conduit replaced via catheterization every 10 to 15 years as an adult, but in between those procedures should be medication free.

Our son will lead a normal, healthy life, which is everything we’d hoped for.

The doctors, nurses, and staff were simply going about their daily duties, but to us they were God in disguise.  We met so many wonderful and extraordinary staff along the way.  There seemed to always be someone reaching out to us; there was even a medical staff member designated to give us updates every hour during his surgery.

U-M athletes visited the children during our hospital stay and they signed hats not only for Darren but the rest of us as well.  Even the parking garage attendant in the P4 parking garage was so friendly and encouraging.

mott blog - kreps family help usOne program that made an especially big difference for our family was the Child Life program at Mott.  There was even someone there on the Child Life team whose job it was to reach out to the families of patients to help them cope with what we were going through together, which was great for Darren’s siblings.  The kids received dolls that were used to help them understand what Darren was going through.  They also loved the amazing playroom on the eighth floor.  And on Friday nights there were kids movies and popcorn in the food court, which they had a blast attending.

Incidentally, we didn’t realize it at the time but have learned that the Child Life program is 100% supported by contributions from generous donors, who enable them to work night and day to help kids be kids during their treatment, to cope with and adjust to their diagnosis, treatment and recovery.  If you’ve ever looked for a way to make a contribution of any size and know, without a doubt, that it will make a difference in a child’s life – supporting the Child Life program at C.S. Mott Children’s Hospital is one way you can do just that.

 

Darren and his family will be part of the WTKA Mott Takeover on Friday, May 17.  You can hear the Kreps family during the 12:00 hour on WTKA Sports Talk 1050 AM.

——————————————————————————————————————————————————————————

mott blog - kreps family thumgErik and Sandy Kreps live in Brighton, Michigan with their children, Trevin, Madeline, Alex, Rhiana, Cierrah, Jason, and Darren.

 

 

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.