Meet Kingston

Kingston Morris does not have a right hand or a left foot; his left hand is small, and part of his jaw is missing.

But what he does have is a totally devoted mother who never leaves his side; a Children’s Mercy Kansas City staff committed to his development; and a plucky, fighting spirit and zest for life that is astounding his caregivers.

Kingston was born in the Elizabeth J. Ferrell Fetal Health Center in March 2023, when a team of nearly 30 Children’s Mercy providers and several departments completed a rare EXIT-to-airway procedure after months of planning. An EXIT (Ex Utero Intrapartum Treatment) procedure is similar to a cesarean section. The infant is still connected to the mother’s placenta, allowing the baby to receive oxygen and nutrients from the placenta while an endotracheal tube is safely placed in the infant’s airway.

Kingston, who has been diagnosed with CHD4 Neuromuscular Disorder, has a number of challenges, but he has shown remarkable progress during his time in the Neonatal Intensive Care Unit (NICU).

“He’s doing amazing things with his little body, batting at his toys with his arms, kicking with his legs (including kicking a ball, ringing his favorite bells) and doing things that nobody thought he could do,” said Mich Hardy, Occupational Therapist.

Advocate mom

Hardy credits Kingston’s 20-year-old mom, Madison, for much of his progress.

“She’s such a great advocate for him,” Hardy said. “She’s here every day. She is so mature and dedicated to her baby. It’s just a really cool thing to see.”

Madison, from the small town of Milan, Mo., said: “It’s been a long journey, but I’ve loved every second of it, watching him grow and overcome his challenges. He’s so strong. He obviously has different limbs, so he’s learning how to use them in different ways than we would. I work with him every day on how to play with his toys and have fun.”

Madison’s family, including her parents, Mitsi and Josh, are her support system. “They’ve been through the whole journey with me,” she said. “They’ve been amazing in helping out with him, and he just adores them.”

Madison learned of Kingston’s issues early in her pregnancy.

“I found out at my 20-week scan,” she said. “Realizing what was going to happen broke my heart. I had a lot of choices, talked to a lot of doctors, and finally I came here to Children’s Mercy, and they were able to help.

Nurse “family”

During their journey, Kingston’s and Madison’s “family” has extended to Children’s Mercy team members, especially three of his primary RNs: Kari Peterson, Meriah Dinwiddie and Kaitlyn Whaley.

“They’ve been amazing,” Madison said. “They adore Kingston, play with him and are like family to me now.”

The feelings are mutual.

“I have been one of Kingston’s primary nurses for almost three months,” said Peterson, “His growth and abilities have exceeded expectations. His sweet side warms my heart, and his strong side has helped him overcome so many obstacles!”

“Kingston amazes me every single day,” shared Dinwiddie. “He has shown incredible resiliency and has met milestones that no one ever thought he would. With innovation and adaptation, Kingston has had the opportunity to thrive. Madison is a selfless caregiver, and her inclusion as a member of the team has benefited Kingston in innumerable ways. I am so excited for Kingston to go home and continue breaking barriers, but I will sure miss him and his mom when they go!”

“Kingston has been such a joy to take care of and get to know during his stay in our NICU,” Whaley added. “It has been amazing watching him grow and develop into the little boy he is. Kingston's mom Maddie has been his biggest supporter and advocate. He has been one of my favorite success stories in the NICU.”

Big moments

Kingston already has enjoyed several fun highlights in his young life: He’s had his first haircut, met Big Slick host Paul Rudd, taken his first trip outside in an adapted stroller in preparation for going home, and visited with facility dog Litta.

Kingston faces a long road ahead in his development, including more surgical procedures, plus physical, occupational and speech therapy. Whatever the future holds, Madison stands ready to persevere, share her family’s story and assist others who share their experience.

“My goal is to help other moms in our situation know that it’s not easy, but you’ll get through it,” Madison said. “The journey is hard. Everything is harder than I thought it would be, but it’s definitely worth it.”