Josephine Maessen

When Samantha found out she was pregnant for the first time, in December 2024, she imagined a smooth and joyful journey. And for the first 20 weeks, that’s exactly what it felt like. Everything checked out perfectly—until her anatomy scan, when doctors discovered a ventricular septal defect (VSD) in her baby’s heart. From then on, she and her husband, Austin, entered a new world of weekly ultrasounds, specialist visits, and more questions than answers.

Despite measuring small throughout the pregnancy, nothing indicated anything life-threatening. Samantha’s OB mentioned the possibility of a syndrome but assured her there weren’t enough markers to know for sure. She was hopeful and prepared to deliver at SSM Health St. Mary’s, where the plan was to monitor the VSD until the baby was older.

“On August 28, at 37 weeks, our daughter Josie was born via C‑section,” Samantha said. “The delivery was smooth, but within seconds everything changed. Her first APGAR score was 1. She was struggling. She needed bubble CPAP immediately and after several more minutes she only reached a 4 or 5. I never even got the chance to hold her before she was taken to the NICU and intubated. By that evening, she required a high‑pressure ventilator, and by 6 p.m., she was transferred to SSM Health Cardinal Glennon.”

By Josie’s second night in the NICU, she was placed on an oscillator delivering 500 breaths per minute. The team ordered urgent genetic testing because of her extreme respiratory needs. They warned Samantha and Austin that ECMO might be necessary. Miraculously, she slowly improved and didn’t need it—though it took days of trial and error to find the right ventilator settings.

One week later, the genetic results came in. Dr. Braddock sat with Josie’s parents, delivering news no parent ever wants to hear. Josie had Trisomy 18.

“We cried, “ Samantha said. “We were told that most babies with Trisomy 18 don’t survive birth, let alone the first week.” But Josie was already two weeks old. She was fighting. So Samantha and Austin decided they would fight with her—asking only, “What’s next?”

A NICU doctor introduced Samantha to another Trisomy 18 family whose baby, just five weeks older, was preparing to go home on oxygen. For the first time, she saw that home might be possible.

Dr. Ottomeyer became Josie’s primary NICU physician. “She was compassionate, honest, and helped us create a plan based on doing what we could for Josie, not to her,” Samantha said. “Our focus was always quality of life, and making whatever time God gave her, the best it could ever be.”

For months, Josie was immobile and dependent on her ventilators. An airway evaluation at the end of October showed her airway was 90% collapsed—almost entirely dependent on artificial pressure. Her team discussed a tracheostomy as a way to improve her comfort and mobility. “On November 21, one day after our wedding anniversary, Josie had her trach and G‑tube surgery,” Samantha said. “The procedure went smoothly, but by the next morning she began having significant heart rate and oxygen drops. She finally stabilized after adjusting her ventilator from volume support to pressure support. Once she recovered from that episode, she really began to thrive—gaining weight, waking up more, and engaging with us.”

“In the beginning, we used to go home every night,” Samantha said. “Josie was so sedated and exhausted that she wasn’t awake long enough to notice. But once she improved after her trach, I realized she became anxious when I left. So, in January 2025, I started staying day and night. Austin and I learned every aspect of Josie’s trach care. We wanted to be fully involved—her advocates, her comfort, her constants.

A cardiac catheterization near the end of January determined Josie wasn’t a candidate for VSD repair due to her lung pressures, but she didn’t need any cardiac or pulmonary hypertension medications and that was a blessing that Sam found comforting. Knowing she wasn’t going to have a heart surgery, the focus was placed on what was needed to get home. To qualify for a home ventilator, Josie needed to reach 11 pounds. By late January, she did it! February was spent fine‑tuning ventilator settings and also determining nursing care once they were home. Samantha and Austin faced a month-long delay due to insurance. “A NICU social worker guided  through applying for Medicaid—something no parent imagines needing,” Samantha said. “But ultimately, it’s what made going home possible. After 202 days in the NICU, we finally got to bring Josie home.”

Josie’s parents received nursing support overnight and a few days each week. “She continued with her home ventilator, G‑tube feedings, monitors and medications. Because of her grade 3 kidney reflux, she’s also prone to severe UTIs. She’s been airlifted once from SSM Health St. Joseph’s Hospital to Cardinal Glennon. I am endlessly grateful for the STARS program—having a team who knows her and understands how quickly she can decline has been lifesaving.”

“Being home was wonderful…but lonelier than I expected,” said Samantha. “I missed our NICU nurses, our night-shift conversations, the secretary who checked on me every morning, the physicians who had become part of our daily life, and the other moms who had become like family.”

On August 28, 2025, Samantha and Austin celebrated Josie’s first birthday in the park. “Dr. Ottomeyer, my NICU mom friends, and so many of our primary nurses joined us,” said Samantha. “It felt surreal—a celebration we once weren’t sure would be possible.”

Since then, Josie has blossomed. She’s rolling over, playing independently, and exploring her world. She receives occupational, speech, and physical therapy weekly and has cardiac follow‑ups with echocardiograms every few months. Her care team spans multiple specialties—pulmonology, cardiology, ENT, GI, nephrology, urology, ophthalmology, and complex care. In October 2025, she had surgery to re‑route her ureters in hopes of reducing infections. “Today, our focus is helping her spend more time off the ventilator during the day and enjoying the little victories that come with each new milestone,” Samantha said. “Josie has defied expectations every step of the way. She is our miracle, our teacher, and the strongest little girl we know.”