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Cleft-Craniofacial Community Stories

Ethan Katsumi Jessop

My husband and I were ecstatic when we found out we were pregnant as we had been trying for a year. In addition to the excitement, our sister-in-law was due to have their baby boy in just a few months, so the two would be about 6 months apart. Everyone was very excited that there would be two new additions to the family only months apart.

During a routine visit to the doctor, we had an ultrasound to find out the sex of our baby. We were going to be happy with either a girl or a boy. Our Ethan made it VERY clear to us that he was a boy! The picture that the doctor paused on was the screen made it unmistakable that he was a boy J. The doctor then took us into a different room and told us he saw that our little boy had a bilateral cleft lip. He could not tell if he had a cleft palate at the time. In trying to make sense out of what I had just heard my first thought was about both our families and knowing that nobody in either family had a history of this birth defect. This was the thing that shocked me most of all. Where had this come from? Tears were shed after the initial shock, but we knew our baby would be beautiful any way we could have him.

Each time we’d go in for an ultrasound and try to see if the palate was affected, Ethan would put his arms in front of his face as if he knew we were trying to look at him. Must’ve been camera shy at the time! So we just prepared ourselves for the cleft lip and the high possibility of a cleft palate. I am somewhat of a research nut when it comes to figuring out as much information as I can about a condition or certain subject whether it is about a sickness or any type of advances in the future. I did major research on cleft lip and palate defects and was comforted at the medical developments of different procedures for the surgeries. Before Ethan was born, we met with the surgeon who was to perform the surgery, and that helped me relax even more. I had every confidence that our little boy would be fine.

Our little Ethan was born on October 23, 2002, and boy did he have a great set of lungs! The first time I saw him, I was so amazed by my little boy. His cleft added character to him. It was then that we found out that he did have a bilateral cleft palate, too. At that moment in time, I didn’t even notice his defect; all I wanted to do was hold my son. He wasn’t able to breastfeed, but he sure did have an appetite! I was pumping constantly just to keep up with him! He was like clockwork; feedings every two hours throughout the whole day.

Ethan’s first surgery took place about 3 ½ months after he was born, and I think it was harder on the parents than it was on him. He was such a trooper! I was truly amazed at the results from his first surgery.

He found the cutest way to get around with his arm restraints on. He had his little “butt scoot”. He looked like a gorilla, putting his straightened arms out in front of him, and then he’d drag his bottom on the floor. He got pretty good at it! He could go so fast! He has pulled through all his surgeries with flying colors, as well as the passing of his father over a year ago. Almost 3 years and 5 surgeries (including tubes and tonsillectomy) later, Ethan, so far, does not need speech therapy! Although there are just a couple more surgeries to come, he has astounded all of us, including the doctors and craniofacial team. He has strength like you just can’t believe. I truly know that God has blessed me with this wonderful boy so we can get through our challenges together. He builds my strength and is the center of my universe. I miss his cleft, as it was such a cute part of his personality, but he has grown into such a handsome boy! I have never asked why this happened to me. I just feel blessed that I have Ethan and I would never give him up for the world!

These children born with defects or any other challenges in life have a strength that I’ll never comprehend. Despite the pain and surgeries they have to experience, and even though many of them won’t remember much about what they went through, they are troopers and will always come out smiling. My son is my true inspiration.

Last Updated: Jul 24, 2006