Theodoros Theo W. Zimonopoulos
Born January 4, 1997
Pierre Robin Syndrome
After a long and difficult labor and delivery, Baby Theo was born via cesarean section on January 4, 1997 at 2:30 in the afternoon. His first cry appeared unusual and not as lusty as it should be. We quickly dismissed this as "just our imagination." Gregory, Theo’s father , noticed before any of the medical professionals that Theo definitely had a problem. He peered into the baby’s mouth and saw that his soft palate was missing. He had a horseshoe shaped cleft palate and his breathing was rather labored. He was rushed almost immediately to Children’s Hospital of the King’s Daughters. As his mother, I was only allowed to see him for five minutes and touch him as he lay in the transport cubicle. It would be almost two days before I could actually hold my baby for the first time. Because I was a first-time mother, this was agony for me.

Upon arrival at C.H.K.D., Theo was taken to the Neonatal Intensive Care Unit and evaluated by a team of doctors. While I recovered in another hospital, Gregory went to see our baby and speak with his doctors and nurses. Theo was diagnosed with Pierre Robin Sequence. Pierre Robin Sequence as we understand it is a cleft of the palate (usually horseshoe-shaped) and an underdeveloped lower jaw which can lead to breathing difficulty due to a smaller than normal airway. The doctors and nurses that my husband encountered at C.H.K.D. were so kind and reassuring that he returned to me assuring me that our precious baby was receiving the best care possible. This made our journey-to-come much more bearable. We had no idea what the next few months would bring.

At four days old Theo had his cleft palate repaired in the hopes that he would be able to bottle feed normally and gain weight. He was born at a healthy nine pounds. The cleft palate repair was a success, but Theo relied upon a nasal trumpet to secure an open airway. The placement of the nasal trumpet was also very specific for him in order to breathe as well as he could . His airway was still too small to allow him to breathe effectively. We watched helplessly as he gained weight (2-3 ounces) only to lose it the next day due to labored breathing.

After agonizing over our plight for another week and a half, we concurred with the doctors’ opinion and gave Theo a tracheotomy at one month of age. The trach gave him a secure airway and he could now bottle feed and breathe simultaneously without choking and sputtering. We were delighted to see our beautiful baby boy smile and "flirt" with all the N.I.C.U. nurses. Theo began to gain weight rapidly thereafter and was discharged at six weeks and 3 days old.

Theo had his trach removed at six months of age. He achieved the few millimeters of jaw growth that he needed very quickly. We now have a happy, healthy little boy.

This ordeal was unexpected and will never be forgotten, but it has made us extremely thankful and has brought us closer together as a family. Friends and relatives often marvel at our strength and comment that they would never have been able to deal with this situation. We smile and say "Yes , you would. You would have to do so for your baby’s sake." Our strength is derived from God and through the prayers of others. Of course we extend a very special thank you to all the doctors and nurses at C.H.K.D. Their caring and support reaches far beyond the hospital walls.

Gregory & Mary Ann Zimonopoulos
Tel: (386)846-3308

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