My world stopped when the doctor told me that my child had a cleft. The honest first thought was, I don't want him. My husband and I agreed before hand that if something happened to the baby, he was to go with the baby. And he did.
They did not take the baby from the room. They cleaned him in the room with me and my family. But I wasn't there. I don't remember anything that had happened after the birth. I rememeber thinking, how am I going to get out of this hospital and leave this kid here.
I was given some heavy medication after John's birth. I had a fourth degree tear and I was told to take medication, so I did. I was told to take a shower, so I did. I was told my child needed to nurse, so I did.
I remember my husband asking me if I wanted to hold him. At that point I was still shaking and I didn't want to hold that child. That child is not the child I saw when I looked at the ultrasound pictures. That child is not the child that I dreamed about for Nine months. I didn't want that child. I wanted the child that had died, the one that never exsisted.
By the next morning, I had things in perspective. I thought, we will sew it up, no one needs to know that my child is defective. Oh, if only I knew then what I know now.
That afternoon, the local plastic surgeon came into see us. The plastic surgeon, we will call him Dr. John, has been a family friend for some years and was surprised to see that it was me when he entered the room.
Dr. John put it ever so gently that John had a midline cleft lip. Ok, I thouhgt, tell me when you are going to fix it. Dr. John wouldn't do that though. What he told me next, no parent should ever hear. Dr. John told me that in 30 years my child was the second child he has seen with a midline cleft lip. The first child did not live to see the 4th day of his life. Oh, great, I thought, now he is going to die.
We left the hospital in a daze. I didn't know how I was going to face the world with my less than perfect child. My neighbor came down the night we got home from the hospital.I had called her from the hospital and told her about John's cleft.When she saw him her comment was, "Oh that is it? You made it sound like his face was gone."
Two weeks after John was born we had another appointment with Dr. John. My sister took me and listened intently. When we got to the car I looked at her and told her to tell me everything that he had just said. Basically, John needed to get an MRI done to rule out Holoproencephaly. Basically that is a cleft in the brain. An MRI was ordered and scheduled when John was only 3 weeks old. The MRI was done at 11 in the morning and by 3 that afternoon we found out that John had a normal brain. My baby was not going to be mentally retarded. At this point we were sent to Riley's Children's hosptial in Indianapolis, Indiana. There we met our crainofacial team and the angels who gave my baby his new smile.
As new parents, we were stressed out enough. Having to go to a doctor 3 hours away to find out my baby boy fate added a lot more stress.
When we met Dr. Eppley, his reaction to John allowed me to breathe some. I was told that we were one of the luckiest set of parents that he has met. Midline cleft lips often come with a lot of other problems. None of which John had. Dr. Eppley told us constantly how lucky we are, and that we should count our blessings.
We scheduled surgery at that visit for three months later. It was final. My child was going to be fixed. But the issue is, there was nothing ever wrong with him. It is only in hindsight that I see that now.
At John's one year checkup after surgery Dr. Eppley addressed the issue of John's face. He told us that John has something called Frontonasal Dysplaisa. Basically that means that the face formed somewhat differently than normal. John has wide set eyes, a large wide nose and a large forhead. There is nothing that we can do for Frontonasal Dysplaisa. I compare it to having freckles. It is something that you are born with, it is just there. You accept it, and move on with your life. John has the option of of having a reconstructive nose surgery when he is older.
I don't know if John is going to have that surgey. It is going to be his decision. I know that I love him the way that he is and there is nothing that I would change about him.
