It was a nine-year journey before John and Valerie Kilen became parents. Val finally became pregnant in 2023, and because of her age, she was considered high-risk.
“I was seeing a doctor at another hospital, and at my 20-week ultrasound, they noticed there were problems with the baby’s heart,” explained Val. “The hospital didn’t have a pediatric cardiology program, so we transferred our care to Advocate Christ Medical Center, and then later, Advocate Children’s Hospital – Oak Lawn. We were cared for by the most phenomenal staff.”
Advocate Children’s recently became one of just a few programs in the region to offer advanced fetal echocardiograms using a new state-of-the-art technology, the Volusion Expert 22 ultrasound system equipped with fetalHQ software.
Made possible through a generous donation by the Busking family, this new system takes fetal echocardiography to the next level, ensuring the most advanced diagnostic capabilities for fetal hearts.
“One of first times the team used the new fetal echo was on me. There was even a representative from the company there to help.”
Using the new system, doctors were able to diagnose Val and John’s baby with Tetralogy of Fallot, a rare and critical condition caused by a combination of four congenital heart defects. Her care team kept a close eye on the baby and Val throughout the rest of her pregnancy.
“I had about five fetal echo tests before our son was born,” said Val. “During each experience, we learned more about his condition, and the team was prepared for his delivery.”
Clayton was born via C-section on Oct. 24, 2023. His doctors operated two days after he was born, putting in a stent to help promote growth in his arteries.
In addition to his heart diagnosis, Clayton also had an unrelated condition that obstructed his airway, which meant more time in the hospital. While there, doctors used a traditional echocardiogram device to monitor his heart and found that the stent had begun to narrow.
“He ended up needing open-heart surgery to put in a conduit, close a hole and rework a valve. Had we not had this care team, it could have been very overwhelming. But we had an experienced team of experts who made sure we had all the information we needed to understand what was happening. We always felt like we were in incredibly capable hands.”
In all, Clayton spent more than 80 days in the hospital – first in the NICU, then in the pediatric cardiac intensive care unit (PCICU).
“When we left, I cried. I didn’t want to leave,” admitted Val. “They played ‘Life is a Highway’ as nurses, doctors, surgeons and specialists lined the hallway. They cheered, blew bubbles and of course, there were lots of hugs. It could have been a very challenging experience but instead, it was rewarding.”
Clayton’s journey isn’t over. He’s still receiving treatment for his obstructed airway, and he’ll need additional heart procedures as he grows. He’ll also have regular checkups to make sure everything is as it should be.
“He’s almost 3-and-a-half months old and doing great. He’s such a happy, outgoing little guy, and I believe it’s all because of the care and support we all received at Advocate Children’s.”
How you can help
At 18 weeks gestation, a baby's heart is the size of an olive and beating 150 times per minute, making it extremely difficult to capture images of the fetal heart. Advances in technology, including fetalHQ, and philanthropic support have made what was once impossible, possible.
“With the new machine, we can confirm a fetal cardiac diagnosis, refine the details of the cardiac anatomy, and ensure that mom and baby receive the best care possible,” said Eleanor Ross, MD, pediatric cardiologist, and member of the Advocate Children’s Hospital fetal heart team.
“If this device hadn’t been available, I’m not sure how our journey would have turned out. We’re so grateful to the donors who make the latest technology possible and for our incredible care team. They’re saving lives every day,” added Val. “In a really difficult time in our lives, we built lifelong relationships. They’re our second family.”
To make a difference in the lives of babies like Clayton and their families, please make a gift today.