In 2023, Stephanie, a mom and homeschool teacher from Virginia, found herself expecting her fourth child. Little did she know, this journey would lead her family to Nemours Children’s Health, bringing them expert care for her newborn son, Sawyer, who was diagnosed with osteogenesis imperfecta (OI) a condition that affects bone strength. In someone with OI, bones may break (fracture) easily, resulting from minor trauma or no clear cause.

Before Sawyer’s arrival, Chris and Stephanie’s life felt complete with their three children: Cassie, Evan, and Eli. While unexpected, the news of a new addition to the family was quickly met with surprise and excitement. The entire family eagerly prepared for their newest member’s arrival.

On a whim, Stephanie decided to take advantage of an extra ultrasound through a free service that was offered at her Pregnancy Resource Center. She wanted her other children to be involved and thought this was a great way to let them be a part of the pregnancy. With Evan and Eli at her side, the technician began Stephanie’s ultrasound. However, as the ultrasound unfolded, Stephanie noticed a change in the technician’s expression and immediately knew something was wrong. The unease in the room grew and her children were ushered out.

Sawyer’s measurements were two weeks behind, prompting a full workup that revealed OI. “I received the news while in the parking lot of the YMCA with all the kids in the backseat,” says Stephanie. “I quickly googled, as everyone does, and read a lot of overwhelming and disheartening information. It was the darkest moment of this whole process.”

Upon learning Sawyer’s diagnosis, Stephanie and Chris began researching to find the best care possible for their child upon his arrival. They utilized the power of social media to share the news of their child’s diagnosis and immediately connected with other OI families. It was on Facebook that they discovered Nemours Children’s Health, a recommendation from another OI mom.

Just a week after receiving the diagnosis, Stephanie and Chris called Nemours to determine a care plan for Sawyer. Immediately, they were connected with the OI team including genetic counselor Andrea Schelhaas, OI pediatrician Dr. Ricki Carroll, and the Advanced Delivery team. From the first prenatal consult with the OI team, Nemours became home for Stephanie and her family. The OI team played a pivotal role in guiding Stephanie and Chris through this unexpected chapter of their life. While their local care team suggested termination, Nemours celebrated the family’s joy, offering congratulations, informed counseling, and expert care. The OI team was thoughtful and took into consideration not just Sawyer’s potential needs, but the needs and hopes of his entire family. “It was a world of difference,” says Stephanie.

On September 18, 2023, Sawyer entered the world at Nemours Children’s Hospital, Delaware. A week of close bonding followed, with both parents staying nearby, and siblings eagerly meeting their baby brother. Stephanie, though an experienced mom at baby number four, found herself in uncharted territory. Immediately following his delivery, the OI and NICU teams collaborated during their daily rounds. Plans were detailed and evolved over time based on what Sawyer needed at that moment. With the guidance of the OI and NICU teams Stephanie and Chris received specialized training on how to care for Sawyer. “It was also an incredible relief to be in an experienced NICU,” says Stephanie. “We didn’t have to worry about a nurse not knowing what to do with a baby with OI when we weren’t in the room. Nemours has opened so many doors for Sawyer and my entire family. While the future is unknown, Nemours has provided endless potential with their expert care.”

Leaving the comfort of Nemours was bittersweet, but Sawyer made incredible progress and was discharged to his home at eight weeks of age. As the Mullikin family returns for Sawyer’s first follow-up visits, they are comforted by the continuity of care from the multidisciplinary OI team at Nemours.

Now, at three months old, Sawyer has already captured the hearts of his siblings and is thriving in the midst of his noisy, loving family. “He’s already one of the pack,” says Stephanie. Spoiled with affection, Sawyer is a testament to the resilience of families facing unexpected challenges and the impact of expert care provided by Nemours Children’s Health.

The post A World of Difference: Sawyer’s Story appeared first on Nemours Blog.