Rowan’s Story
Rowan (age: 4) with his parents, Reginald and Emily
Rowan was diagnosed in utero at our 20-week anatomy scan with two major birth defects.
A congenital diaphragmatic hernia and cleft lip with probable cleft palate. He was born prematurely at 33 weeks and four days.
Immediately after being born, doctors intubated him and rushed us to Le Bonheur Children’s Hospital to stabilize Rowan. At three days old, he underwent a diaphragmatic hernia repair in which the surgeon pushed his organs back into the correct places and sewed his diaphragm. At two months old, after doctors realized Rowan was overworking himself to eat, he underwent open heart surgery to repair a large hole in his heart. The surgery seemed to help some, but not enough. We made the decision at three months old for him to have a gastronomy tube placed in his stomach so he could finally come home in June 2016.
One month later Rowan was rushed to the ER due to respiratory distress caused by a pulmonary hypertension crisis.
He was intubated and bounced around various ICUs as doctors, nurses, and respiratory therapists worked to figure out a solution for him. Finally, one doctor recommended we add an additional medicine that worked. Rowan came home for good in October 2016.
Even though he was home he still had cleft surgeries to complete.
He underwent a lip adhesion surgery in December 2016 followed by a full lip repair surgery in March 2017. He had his partial palate repair in July 2017.
Rowan still has a small hole in his hard palate that will likely be surgically closed in a couple years. He currently receives speech therapy to help with his articulation; some of his articulation problems may stem from still having the small hole in his palate and the inability to create pressure in his mouth. He had his g-tube removed in March 2018 and has been eating like a grown man since he was one and a half years old. His smile and personality are contagious, and he's a gentle, old soul.