A Wapakoneta family is again walking this year to raise money for the American Heart Association, specifically congenital heart defects.
Jessica and Dan Makuh’s two daughters, Abby and Lauren, are joining them in the Dayton Heart Walk on Saturday. It’s their second walk as a family and means even more as Lauren nine weeks ago underwent her third and final heart surgery in a series for hypoplastic left heart syndrome, a condition with which the 3-year-old was born.
“She is doing wonderfully and we realize how blessed we are to still have her with us,” Jessica Makuh said of her youngest daughter. “Unfortunately, not everyone is so lucky.”
Statistics show that children with hypoplastic left heart syndrome have a 70 percent chance of surviving to their fifth birthday. Not a lot of statistics exist beyond that.
Medical advances, including the possibility of one day being able to grow hearts with stem cells, offer encouragement. Cord blood saved from each of the girls’ births offers the possibility of one day saving Lauren’s life with a heart grown from their cords less likely to be rejected.
“We hope and pray every day that Lauren will be with us for many, many years to come,” Lauren’s mom said. “She is such a happy, funny and loving child.”
Despite congenital heart defects being the most common of heart defects — affecting one in 100 births — research for the condition is minimal and it is still unknown what causes them. Only a small percentage have been found to be genetic.
The hope is that if more funding would go toward researching congenital heart defects, perhaps a cause could be found and more could be prevented, Makuh said.
“I hope some day they are not a leading cause of death in infants,” Makuh said of why she walks in the fundraiser. “I also want to walk to bring awareness for congenital heart defects.
“We knew nothing about them when Lauren was diagnosed after birth and I want people expecting a baby to know more about congenital heart defects in case they are devastated by this diagnosis,” she said. “My first question was ‘What is hypoplastic left heart syndrome?’ I wish I had known more before we had kids.
Since Lauren was born, two family acquaintances of ours have had children diagnosed with congenital heart defects,” she said. “It’s a lot more common than you think. Chances are if you don’t know someone with a congenital heart defect now, you will some day.”
The family is joining the Mended Little Hearts Group, to which they belong, in the walk. The Dayton organization has an agreement with the American Heart Association that all donations they receive are to be directed straight to congenital heart defects, which normally only receive 1 percent of donated funds.
Last year, Mended Little Hearts was one of the highest grossing groups participating in the walk and the Makuhs said they are hoping to do just as well this year.
“Perhaps one day, the medical community will know how we can prevent congenital heart defects from devastating families and congenital heart defects will not be one of the major reasons children under the age of 1 die,” Makuh said.
Lauren’s mom said the night she and her husband learned their daughter had hypoplastic left heart syndrome was the most devastating evening of their lives and they wouldn’t wish it on anyone.
“She has completed all three surgeries in the series so that she might live, but her heart anatomy will never be normal,” Makuh said.
While Lauren and her older sister, Abby, are walking with their parents in the Heart Walk, their mom said she isn’t sure it means much to them yet, but as they get older, the Makuhs plans to talk with their children about the meaning of each walk.
“We will tell them this year we are walking so that more people know about kids with special hearts,” Makuh said. “Abby will understand much more than Lauren since she is 6-years-old.
“They certainly understand that Lauren has a heart defect,” she said. “We call it her ‘special heart.’ We have always been honest with them about it, although they do not know it is life threatening, a fact we don’t want them to be aware of yet.”
The Makuhs said the mortality of the situation is something they don’t want their young daughters to worry about now.
“It’s hard enough for them to face surgeries and doctors’ appointment,” Makuh said. “We also want them to always have optimism in regard in Lauren’s health. Mommy and Daddy can worry about the negative aspects.”
Lauren is aware she has a “special heart” though, and because of her surgery this summer, the preschooler talks about it a lot, wanting to show people she meets her incision and proudly boasting that her surgery is all done.
Physicians are not able to correct the defect to Lauren’s heart because they can’t grow a complete left ventricle and aorta, but they can reroute blood flow to sustain her life, although it is not a guaranteed correction. Chances are Lauren will need more surgeries or even a heart transplant some day, but her surgeries have prepared her better to battle valve dysfunction, arrhythmias, heart failure, and a few other complications.
With the oldest person with Lauren’s specific heart defect only in his late 30s, physicians do not have a lot of information on what the future holds for her, plus each individual heart is unique, her mom said.
“Some have it easier than others,” Makuh said, “and you just never know what your child will face.”