When Maddox Mariano was born at 37 weeks, he was rushed to the Neonatal Intensive Care Unit (NICU) at Kapiolani Medical Center for Women & Children, not because he was born prematurely, but because Maddox had hydrocephalus.
Hydrocephalus is an abnormal accumulation of cerebral spinal fluid in the brain, caused by Dandy-Walker Syndrome. Maddox's parents learned of his condition when his mother, Marianne, was 16 weeks pregnant.
"Being that Maddox is our first child, we felt sad, scared and mad. Sad because we already knew he was going to be born different form the rest; scared, because he was going to undergo a lot of surgeries; and feeling mad and a little selfish for bestowing this upon us and our first born," says Marianne.
After Maddox was born, he stayed in the NICU for two weeks before getting the green light to go home.
However, a follow-up visit with Maddox's neurologist found that he had craniosynostosis, a defect in which one or more of the joints between the bones of the baby's skull close prematurely, before the baby's brain is fully formed.
"When your baby has craniosynostosis, his or her brain can't grow in its natural shape, and the head is misshapen," explains Marianne. "He had to undergo another surgery to reshape the head and allow room for the brain to grow."
Maddox was 11 months old when he had his second surgery at Kapiolani. Following surgery, he was transferred to the Pediatric Intensive Care Unit for two weeks, and then to the Carter Unit, where Marianne was working as a clinical assistant at the time.
"It felt so weird to be on the other side of the door as a patient's mother, but the care was still top of the line! I cannot thank the staff here at Kapiolani enough for all their hard work and compassion," she says.
Maddox is now 5 years old, goes to kindergarten and loves to sing and watch YouTube. He uses his walker and wheelchair for assistance to get around but would rather just crawl when at home because "he gets to places faster that way."
Published on: December 5, 2016