When Zach Siekert’s position as a Black Hawk helicopter crew chief and mechanic in the U.S. Army took him to Afghanistan, the last thing he expected to find was love. But that’s exactly where he met his future wife, Tarah, who was also serving in the Army. After settling in to their marriage stateside in Lillington, North Carolina, Zach and Tarah decided to grow their family and were overjoyed when they found out Tarah was pregnant with a baby girl. However, their feelings quickly shifted when tests showed that their unborn daughter had a genetic disorder called Turner’s syndrome that comes with a high risk of miscarriage and stillbirth.
Turner’s syndrome is a chromosomal condition where one of the X chromosomes is either missing or structurally altered in females. Babies with Turner’s who survive birth have a high incidence of heart defects and also experience developmental problems later in life.
“We were devastated when we found out about the Turner’s,” said Zach. “It’s hard to think about something that you created being imperfect in any way. The high risk of stillbirth sat in the back of our minds the entire time.”
Zach and Tarah spent the rest of the pregnancy in a state of anxiety, not knowing what the next day would bring. The months continued to pass and Tarah’s pregnancy went well, and in November 2013 they welcomed their daughter Ashlynn into the world. Doctors confirmed that she had multiple heart defects related to Turner’s syndrome, though, and baby Ashlynn had her first open-heart surgery shortly after birth.
“I was deployed in Afghanistan when she was born and diagnosed with her heart condition. I was an absolute wreck but tried to put on a brave face for my wife since I knew it was even harder on her,” said Zach.
Ashlynn’s condition continued to worsen when she stopped breathing the day after her first surgery and suffered brain damage from the lack of oxygen. The brain injury has caused seizures, respiratory issues and developmental delays.
“Having a sick child is an emotional roller coaster. You get good news one day and bad news the next. You can be on the verge of leaving the hospital and have a new issue come up that prevents it. It’s stressful trying to balance that with buying your first house, taking care of our dogs and each other. It has been incredibly hard on us and it can definitely take a financial toll when we have to travel over an hour for appointments roughly 10 times a month,” said Zach.
The Siekert family can’t stay in the hospital room with their daughter, so they were referred to the Ronald McDonald House of Chapel Hill by the nursing staff. They have stayed at RMH Chapel Hill for a week at a time and the house can also ease travel burdens for scheduled appointments.
“The Ronald McDonald House is not a hotel that you pay for a room to sleep in and maybe get breakfast. It’s a home. It feels like you have been invited in by your friends and family to sleep, eat and relax. It’s a place to get away from the stress of being in the hospital. You meet other families that are in similar situations so you can talk about what’s going on, which is priceless in my opinion,” said Zach. “You can tell friends and family but they will never truly understand unless they have been though it. It has reduced the stress from my wife and myself tenfold.”
Tarah retired from her military service to take care of their daughter full-time with the assistance of home nurses. They are enjoying their time as a family together, and say that Ashlynn is their inspiration to keep going.
“She truly is a miracle child that shouldn’t be here given her odds. But she wakes up everyday and smiles so big it could light up the world,” said Zach.