New Page 0

I was told from the time that I was 18 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 2 years of trying but shortly thereafter, we found out that we were expecting. Deklan Adley was born on Aug. 1, 2006 at a perfect weight of 6lbs 4oz. I was watching my husbands 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 & palate before that day and I was really scared. Deklan was born with an incomplete unilateral cleft lip and palate. They might as well have spoke 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 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 for the rest of his life. He remained in the NICU for 6 days and we finally got to take him home, our little family was complete and we were never happier.

I knew we would have to face surgery so I just tried to forget about it since it was what seemed like a long way off into the future. As the days went on we slowly started to take him 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.

The days grew closer to his first surgery at 3 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 thoughts that I kept feeling were, 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 once again pried him out of my arms to take him away, my husband and I wept for what seemed to be an eternity. We were told that the procedure would be about 1.5-2 hours long. When the clock hit 2 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. The thought kept entering my head of all the comments from friends and family telling 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.

Finally after 3.5 hours the Dr. came out and said it was a success. He began to walk us back and I have never been so nervous in my life. Caution to parents reading this next section, it is pretty brutal. 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 it was a horrible sight. My baby’s arms were bound by arm restraints 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 viscous 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 utill he ate. Finally after 1 hour of crying he for the first time in his life ate from a bottle, a real bottle with his own suction! What 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 actually started looking worse. The Dr. stated that since Deklan’s cleft was so wide that when you stretch skin over that amount of an area, the scarring can be much more severe. His nose began to twist down and his lip up as the scar tissue was healing. We were told that Deklan would have another surgery to revise his lip and work on his nose between the age of 18-24 months of age.

Deklan had his revision surgery at 22 months of age a

s planned and he came through with flying colors. I have to say that it was much easier this time than the last. Partially because we had been through it once, but also because we felt very confident in our surgeon. After Deklan’s first surgery was healing oddly, we sought a second opinion and decided to switch plastic surgeons. Don’t be afraid to seek out other Dr’s if you feel you are concerned in any way. Remember this is your child and you want the best for them. As it turns out Deklan is just prone to harsh scarring and the same severe scarring reoccurred. As time goes on there are things we can do to help lighten the scar as he is willing to tolerate them, mainly silicone strips and massage.

Our latest news is that Deklan was recently diagnosed with autism. He is now 26 months of age and was showing severe signs of developmental delay. We were proactive

about getting him into speech therapy at the age of 14 months old but were not seeing much progress. When we finally came to the realization that there was something more going on, we sought for help. We were so blessed that he was accepted into a preschool for autistic children and we are already seeing amazing results with him. I realize more everyday that no matter what changes Deklan may go through, the bottom line is that we love HIM and is in every way my little miracle child.

Parents please feel free to email us with questions @ nguyens11@aol.com, I know whether you have a child with a birth defect or special needs, it is difficult to come to terms with but know that there are others who have gone through it and in hindsight it has made us all a little stronger. For the longest time I thought that I had lived a very hard life and it should start turning around here anytime. I now look at things in a different light, all of those hardships were to prepare me for the little boy God chose for me and I wouldn’t have it any other way.

Deklan’s Story