Whenever Jaclyn and Tony Doffin of Blaine hear comments about them having two sets of twins, they tell Grace’s story.
Grace Lillian Doffin was born at 5:23 a.m. Sept. 8, 2008 just seconds after her brother Tyler and one minute before her sister Sophie.
Tyler and Sophie are now four-and-a-half years old and perfectly healthy. Grace was born with a bad right ventricle that prevented her heart from effectively pumping blood to her lungs to get oxygen. She was also diagnosed with heterotaxy syndrome because her organs were not in correct places.
Doctors tried multiple surgeries to save Grace, but she died July 7, 2009, just one day short of her 10-month birthday.
The Doffins’ two other children Amelia and Crosby were born 21 months ago.
Jaclyn and Tony think about Grace every day, and they want to help families dealing with their own medical problems.
The fourth annual Hope in Grace fund-raiser to benefit pediatric cardiology research is Saturday, April 20 at Lakeside Commons Park in Blaine.
“That’s something we learned from talking to other parents who lost their children is that there’s one common bond regardless of how or why or when we lost our children,” Jaclyn said.
“We all want our children to be remembered, and so this is our way to remember Grace and be sure that other people are impacted by her life and her story.”
The fund-raisers have averaged around 300 people each year and have raised about $53,000, Tony said.
Grace’s pediatric heart surgeon Dr. James St. Louis and her pediatric cardiologist Dr. Shanthi Sivanandam have come to support them.
The event begins with a silent auction and registration at 2 p.m. The 2.5-mile walk and five-mile run begin at 3 p.m.
Registration and event details can be found at www.hopeingrace.org. The Doffins formed a nonprofit, so all donations are tax deductible. Those who sign up before the end of March pay a reduced entry fee.
Jaclyn and Tony learned on April 1, 2008 that they would be blessed with triplets, but just one week later they were informed that “Baby B” was not healthy.
Grace remained at Amplatz Children’s Hospital at the University of Minnesota for two and a half months after she was born and needed a ventilator most of the time. Grace only weighed 3 pounds, 13 ounces at birth, so she was too delicate for an immediate operation.
Grace was baptized Oct. 4. Just 10 days later, she had her first open heart surgery to place a shunt to help the blood flow between her heart and lungs.
On Oct. 23, she had abdominal surgery. Prior to her first heart surgery, Grace was fed through a tube in her nose or an IV. They later tried a bottle, but she struggled with digestion. The culprit was the heterotaxy syndrome. Grace’s intestines were too twisted. She had no spleen and she had a transverse liver that crossed over her abdomen. The surgery was meant to get her organs in the right places.
Grace was finally able to come home Nov. 22, but her parents knew she would need more open heart surgeries as she continued to grow. The second came on March 10, 2009 to place a larger shunt in her heart. Grace recovered quickly and was able to go home in three days.
The Glenn procedure and the subsequent Fontan procedure would have hopefully given Grace a functioning three-chambered heart.
Tony and Jaclyn took Grace to the hospital on July 7, 2009 for the Glenn procedure, but surgery was postponed to the following morning. Grace died that evening.
Although Grace had a tough and short life, her parents remember eyes that lit up when she smiled and how the nurses and hospital staff spent countless hours holding her when family members could not be there.
This compassion meant a lot to Jaclyn and Tony, so they will be recognizing pediatric intensive care nurses who have gone beyond the medicine and helped families cope. They are accepting nominations from parents through July and will award nurses in September with money they can use for continuing education, according to Tony.
“We wanted to reward things like that that maybe go unnoticed by people that evaluate them on their side,” Tony said.
Jaclyn said they recognize that pediatric nurses have the challenge of communicating with parents who can sometimes get in the way.
“The nurses help families navigate what is a really challenging time,” Jaclyn said. “The ones that do it best really do deserve to be recognized.”
Fourth annual Hope in Grace walk/run
Saturday, April 20 at Lakeside Commons Park, 3020 Lakes Parkway in Blaine
Registration and silent auction begins at 2 p.m.
Walk and run starts at 3 p.m.
Visit www.hopeingrace.org to pre-register.
Eric Hagen is at [email protected]