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Cleft-Craniofacial Community Stories

Deklan’s Story


Deklan in the NICU

I was told from the time that I was eighteen years old that I wouldn’t be able to have children, but I was still determined. My husband and I gave up hope of being able to conceive after two years of trying, but shortly thereafter, we found out that we were expecting. Deklan Adley was born on August 1, 2006 at a perfect weight of six pounds, four ounces. I watched my husband’s face as he was being born, and I could instantly tell that something was out of the ordinary. I instantly began to cry. Finally they placed my baby in my arms and I saw him for the first time. I had only once in my life seen a cleft lip and palate, and I was really scared. Deklan was born with an incomplete unilateral cleft lip and palate. They might as well have spoken to me in Chinese, because I knew nothing about it and had no idea what Deklan was going to have to endure. Since they were unable to detect the cleft by ultra sound, it was a surprise, and we were not prepared. I only could hold him for a few seconds before he was pried from my arms and taken off to the Neonatal Intensive Care Unit (NICU). I cried for hours, trying to remain happy for the visitors who were there, but deep down I couldn’t stop thinking about what my precious little boy would have to go through. Deklan remained in the NICUfor six days and then we finally got to take him home. Our little family was complete – we had never been happier.


Deklan, two months old

I dreaded the day that we would have to face surgery, so I just tried to forget about it. As the days went on, we slowly started to take Deklan on outings to the store and church. I was not ashamed of my little boy in the slightest but found myself acting more and more like an extremely protective momma bear. Though people didn’t say anything about his lip, I couldn’t help but sense the eyes that lay upon him. I often found myself blurting out to people who stared too long, “He was born with a cleft lip and palate,” just to get them to quit staring. I don’t know why I felt the need to explain to everyone, but I did. The more time that went by, the more we fell in love with our little boy. I didn’t think it was possible to love someone more each day, but I now can relate to that cliché.


One day after surgery

The days grew closer to his first surgery at three months of age, and it was time to face reality. I remember hanging up the phone with the plastic surgeon and just losing it. The thought that I kept feeling was, “Why does he have to change because society can’t accept difference?” I loved the little boy that God gave me, and I was so used to the cleft that I didn’t even notice it anymore. I wanted him to stay the same forever. I realized how selfish that truly was and that Deklan would resent me forever if we didn’t go through with the surgery. The morning of the surgery was very emotional – we couldn’t sleep the night before and had no idea what to expect. When the nurse took Deklan back to surgery, my husband and I wept for what seemed to be an eternity. We were told that the procedure would be about one and a half to two hours long. When the clock hit two hours I remember looking up and seeing a priest walk into the waiting room and my heart stopped beating. I thought for sure he was coming to tell us bad news. He wasn’t (thank the Lord). I kept thinking of all the comments from friends and family who told us that if there is any defect to have, this is the one because it’s so easily repairable. I’m here to tell you that this is not easy.


Deklan, two months after surgery

Finally after three and a half hours the doctor came out and said it was a success. He began to walk us back to see Deklan. I had never been so nervous in my life. The hall seemed to go on forever, and the first thing I heard was this little raspy, whimpering sound. I knew that was my baby, and my tears started to flow. As they pulled back the curtain to his post-op room I saw that Deklan’s arms were bound by arm restraints, and his face was so swollen that he couldn’t open his eyes. His lip was so tight that it looked unnatural, and he was in so much pain. Instantly I scooped him into my arms to comfort him, but the vicious cycle began: he cried because he hurt, and the more it hurt the harder he cried. He wouldn’t eat because of the pain, and they wouldn’t give him more pain meds until he ate. Finally after an hour of crying, for the first time in his life he ate from a bottle – a real bottle with his own suction! Such a simple thing, but I’m telling you it pulled so hard on my heartstrings. Things would be different from here on out. We got to go home the next day, and what a blessing that was. Everyday got easier and easier as he was healing.
After a few weeks the scar looked amazing. I couldn’t believe the outcome. As time went on the scar seemed to actually start looking worse though. The doctor told us that because Deklan’s cleft had been so wide, they had to stretch skin over a large area. With the stretching, the scarring can be much more severe. Deklan’s nose began to twist down and his lip up as the scar tissue was healing. We then found out that it would take a revision surgery when Deklan turned eighteen months old to correct the healing process that was taking place.


Deklan, one year old

Deklan is now fourteen months old and as beautiful as ever. His personality is just taking off and keeps us on our toes. I realize more everyday that no matter what changes Deklan may go through, the bottom line is that I love HIMand that he is in every way my little miracle child. Parents please feel free to email us with questions at nguyens11@aol.com. I know this is a hard thing to experience but know that there are others who have gone through it. In hindsight, it has made us all a little stronger.

Last Updated: Nov 12, 2007