When blood tests during week 18 of Teresa Hines’ pregnancy were positive for Down syndrome, she was unfazed. “In my mind, my daughter, Kendra, would be perfect no matter what. I could not even imagine our life without her right now.”
Kendra was born seven weeks early at a hospital in Cedar Rapids. Teresa remembers, “She did have a breathing [issue] in the hospital that we could not explain. [The doctors] said it was normal, but to us, it was not normal. After we brought Kendra home, she quit breathing in the middle of the night. It was the most horrifying time of my life. I thought we were going to lose our daughter.”
“It was very sad to see a child gasping for air,” her dad, Mickey, recalls. “I immediately called the ambulance, and they asked, ‘Where do you want to go?’ I said, ‘I want to go to the children's hospital.’”
“We wanted to come directly to Iowa City because we knew that she would be well taken care of here,” adds Teresa. “The doctors, nurses, and staff are just phenomenal. They know their business and they take care of these children to no end.”
Kendra was rushed to University of Iowa Stead Family Children’s Hospital, where doctors diagnosed subglottic stenosis, a narrowing of the airway, and her breathing noise as stridor—a high-pitched, wheezing sound caused by an obstructed airway. She also was diagnosed with laryngomalacia, a common cause of stridor.
“You can't breathe because you have too much skin in your throat, and it causes your throat to collapse,” Mickey explains.
“One being the softening above the voice box and one being the weakening of the cartilage below the voice box,” Teresa adds, explaining the conditions.
Pediatric otolaryngologist Deborah Kacmarynski, MD, and her team performed a surgery that widened Kendra’s airway to help her breathe normally again.
More recently, Kendra was diagnosed with tracheomalacia, a rare condition in which the cartilage of the windpipe, or trachea, is soft and floppy.
“The airway can collapse when she coughs, breathes, or even eats,” Teresa explains. “When she gets worked up about something, a lot of times she gets a coughing spell, [which] causes her trachea to collapse.”
Pediatric specialists ordered a sleep study and discovered Kendra stopped breathing an average of nine times a night. She now uses a CPAP machine at night to help her breathe.
“This hospital is heaven-sent,” Mickey says. “They have hearts of gold. They give you strength to overcome the hardest parts of what your child is going through.”
He and other family members have chromosome tattoos to reflect Kendra's Down syndrome.
“[Those with Down syndrome] have an extra chromosome; it's called trisomy 21,” Teresa explains. “That makes them a little bit more delayed than other children. Kendra is very highly functional, so we are very lucky. In fact, I call it ‘Up syndrome’ because there's nothing down about Kendra whatsoever.”
“There are lots of different things that can be associated with Down syndrome,” she adds. “They can have major heart problems, bowel problems, stomach problems. Kendra has none of that. She does have hypothyroidism and has been on medications since she was 6 months old.”
The couple’s other four children are Kendra’s “biggest supporters,” Teresa says.
Kendra plays volleyball, loves to dance, and says her favorite singer is American Idol winner and Iowa native Maddie Poppe. She also enjoys cheering on the Hawkeyes.
“UI Stead Family Children's Hospital has been our savior,” Teresa says. “I cannot even thank enough people for what they have done for our daughter. Without this place and the people in it, our daughter may not be here today.”