When the doctor asked Jarrett and Alicia Windham if they had a problem scheduling a Caesarean section for Friday the 13 of May, they laughed and explained they were not superstitious. Oveid-Julian Karthie Windham was born May 13, 2011 at 12:19 pm, and named after his grandfather’s Vietnam War battle buddy and great-grandfather. After making the highest possible score on an Apgar test, which determines whether a newborn needs additional medical assistance, he was pronounced a well baby.
From picking out the nursery color to packing a hospital bag in advance, Jarrett and Alicia had planned everything for this day to a T. Waiting to get married when they were more responsible after finishing college and getting settled ‘the way things are supposed to be’ before having children had always been their plan. Six years into their marriage, it was time for a baby in the Windham family after enjoying their early years of growing and learning together as a young couple in Hattiesburg, MS.
“While you can prep all you want, it’s important to enjoy life in the moment too. If it’s one thing our journey has taught us, it’s to pray and then let the chips fall,” Jarrett said.
Upon testing the roof of Karthie’s mouth after birth, medical staff failed to recognize that his frontal hard palate had formed, but the posterior fleshy soft palate was nonexistent. With the palate being divided into two parts, lacking his soft palate would hinder his ability to swallow and close off the airway. Twelve hours after birth, the Windham’s began to notice something was wrong.
Alicia first noticed Karthie was unable to latch when breastfeeding as he gasped for air, unable to suck and breathe simultaneously. He screamed in pain when laid on his back and had to be held upright to prevent his tongue from blocking the airway.
When Jarrett looked down his throat and noticed two white spots on either side of his mouth, Karthie was taken to the neonatal intensive-care unit (NICU) immediately. The Windham’s thought he had breathed in fluid during birth and would recover shortly. However, doctors discovered the spots were two uvula formed on either side of his mouth. Lacking a soft palate and having a smaller-than-normal lower jaw, he was diagnosed with Pierre Robin syndrome, and in need of a tracheotomy. The exact causes of Pierre Robin syndrome are unknown, and symptoms can differ in severity. For Karthie, it meant that without surgery, he would be unable to breathe or swallow, making talking or eating impossible.
When the doctor informed them it could be a few months to years to recover from a tracheotomy surgery, the Windhams vividly remember Alicia exclaiming, “Uh, not my baby!” After experiencing no pregnancy complications and being given a well baby diagnosis, the reality that Karthie must undergo a tracheotomy was earth shattering. By surgically placing a tracheal tube through an incision in his neck, the surgery would enable him to breathe without use of his mouth until additional surgeries could correct his jaw and palate.
Karthie was airlifted from Wesley Medical Center in Hattiesburg, MS to Ochsner Medical Center in New Orleans, LA. Alicia was not supposed to leave the hospital yet due to her Caesarean section having occurred less than 24 hours ago, but she insisted on travelling with her newborn. Though they attempted to rest on the ride, thoughts of their helpless newborn held their attention every waking moment.
“Feeling completely out of control in the situation, I remember the only thing I could think about besides Karthie was, ‘Are the tires ok?’ It’s weird how when things are out of your power, you obsess over things you can control,” Jarrett Said.
With the earliest availability to schedule a tracheotomy being four days away, in the interim, Karthie’s body had to be positioned upright constantly to keep the airway open, as a pulse oximeter monitored his oxygen saturation.
“For four days we just sat there anxiously watching that machine. I can still hear those machines in my head,” Alicia said.
Although the surgery only took a few hours, it was 31 days before they were permitted to leave the hospital after intensive home care training. For 22 hours each of those days in the NICU, Jarrett and Alicia were with Karthie and an occupational therapist, learning to help him breath, swallow and suck.
At last the Windhams were able to celebrate bringing their baby home, though with eating and tracheal tubes, their journey to having a well baby was far from over. Cleaning his tracheal tube twice a day and changing it weekly, in addition to feeding him every two hours through a tube inserted into his stomach, left hardly a moment of rest in their home.
After a year, two final surgeries stood between Karthie and full recovery: a jaw distraction to extend his lower jaw, and cleft palate surgery. Following six weeks of a metal frame on the outside of his jaw from the first surgery, at 13 months, surgeons stretched tissue from next to his teeth to create a soft palate. Finally, at 15 months, his tracheal and stomach tubes were surgically removed and the incisions closed up.
“True to a little boy, when the skin around his tracheal tube hole suctioned closed and made a fart sound, Karthie burst out in a giggle for the first time. Before that moment, he had been unable to make a sound,” Alicia said.
October 19, 2012, Karthie Windham was clear of all medical limitations. Speech therapy began to develop his language skills, and even his ear, nose and throat doctor could not tell his soft cleft palate was man made.
“You never think it’s a big deal to not be able to carry your kid around in the rain, or go to a park that’s got sand in it or play in the wind and fly a kite, but after not being able to do any of that, life changed dramatically in October,” Jarrett said.
Karthie is now three and a half years old, and after having doctors watch for similar symptoms and perform extra ultrasound tests, the Windhams brought a second child, Aubrey Lynn, into their family on June 23, 2014.
While dental work will be necessary due to damage to Karthie’s permanent teeth during surgeries, he attends speech therapy once a week and is developmentally on track for his age.
“He’s a miracle. Every surgery along the way went better and shorter than doctors told us it would. Every surgery was a success, in spite of some of his procedures being experimental. It’s amazing!” Alicia said.