By Starrla Cray
DELANO, MN “What is this?” 3-year-old Joshua Hausladen asks, curiously examining the scars on his tiny chest.
“That’s where the doctors fixed your heart,” his mother answers gently.
Although Joshua was the one to undergo two open-heart surgeries and two heart catheter procedures, his parents Randy and Shanna of Delano have had their share of heartache, too.
“In the three short years of his life, my son and our family have been through more than any child or parent should have to endure,” Shanna noted, explaining that Joshua was born with four heart defects.
Sadly, the Hausladen’s situation is not extremely rare. According to the American Heart Association, nearly one in 100 infants born each year have some type of heart defect.
“We’ve met so many people in our county who’ve gone through similar hardships,” Shanna said.
At a special meeting Tuesday evening, the Delano City Council proclaimed Tuesday, Feb. 7 through Tuesday, Feb. 14 as Congenital Heart Defect (CHD) Awareness Week.
Testing for CHDs is a good idea during pregnancy, according to Shanna.
“It’s better to find out beforehand,” Shanna said, adding that her son’s condition was detected during an ultrasound. “We scheduled a C-section, because we didn’t want him to go through the stress of labor.”
Because doctors were aware of the defects, Joshua was immediately placed in intensive care.
“If they hadn’t known about it, they probably would have sent him home,” Shanna said. “He looked like a normal child.”
Shanna recommends that parents ask for newborn screening using pulse oximetry before leaving the hospital, to make sure a CHD is not present.
Loss, fear, and hope
The Hausladens had a far different experience with their first child, Caitlin, who died of intestinal issues 17 hours after she was born.
“It was a complete shock,” Shanna said, explaining that they had no indication of trouble during the pregnancy.
Because of Caitlin, doctors closely monitored Shanna’s pregnancy with Joshua.
“When they told us there was something wrong, I actually started bawling,” Shanna said. “I thought he wasn’t going to make it.”
The full extent of the damage wasn’t apparent until Joshua was born, however transposition of the great arteries, coarctation of the aorta, double outlet right ventricle, and atrioventricular septal defect.
“The doctors said they had never seen all four defects like this in one child,” Shanna said.
Joshua had his first open heart surgery when he was 6 days old, and his second five months later. His third will most likely be this spring or summer.
Stents were placed at 7 months, and again just after his third birthday last November. A bovine (cow) jugular vein was used to repair his heart, and replacements may be necessary as he grows.
Small, but smart
At 36 inches tall and 27 pounds, Joshua has a lot of growing left to do.
“He looks like a peanut,” Shanna said, adding that he is only three pounds heavier and 2 inches taller than his 18-month-old sister, Macayla.
Joshua, who has a sensory processing disorder, has trouble eating normally, and has been on feeding tubes since he was 6 months old.
“He can’t take large bites of food because he gags,” Shanna said, explaining that he was not used to eating because of heart surgeries.
He attends feeding therapy twice a week, which helps him get accustomed to putting various food textures in his mouth.
Although eating can be a challenge, Joshua finds other tasks quite easy.
“He’s very, very smart,” Shanna said. “When he was evaluated for home therapy, they said he had the brain power of a 4-year-old.”
In the future, Shanna said there’s no doubt Joshua will be able to attend school, although he won’t ever be able to play contact sports.
“We do try to give him as normal of a life as possible,” Shanna said.
Many types of heart defects are not as debilitating as Joshua’s. His father, Randy, for example, was born with patent ductus arteriosis (PDA).
According to the Mayo Clinic, PDA is an opening between two major blood vessels. Typically, the opening closes shortly after birth, but in Randy’s case, surgery was necessary.
Randy, a 1997 Delano High School graduate, now works at Delano Municipal Utilities. His condition was relatively minor, and is considered one of the more common congenital heart defects.
The Hausladens hope that Congenital Heart Defect Awareness week in Delano will be a way to recognize people born with heart defects, to honor health professionals, and to remember loved ones who lost their battle to CHD.