One Of This Month's Featured Families!
March 2003
Landon and Olivia Wilson
Twins Born September 6, 2002
Landon - Microform Cleft Lip
Olivia - Bilateral Cleft Lip and Palate
Illinois
People have asked if having twins is a big shock, and we have to say yes. However, having twins with clefts has been more of a shock. Our babies were born in September 2002 and in these past few months we have learned a lot.
My husband and I knew very early that we were going to have twins. An ultrasound at 6 weeks showed us the exciting news! We already had a son, Jonah, who was five and we were extremely excited about two more.
Because I was pregnant with twins, I was considered high risk and was sent to see a perinatologist. He did many extensive ultrasounds, but somehow the faces of the babies were never completely seen. We did not find out about the clefts until we were in the delivery room.
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I had been hospitalized for two weeks due to IUGR (interuterine growth restriction) with Baby A. The morning of September 6, six weeks from my due date, my doctor discovered that Baby A wasn't moving, so he decided to take them by c-section.
I was nervous to have a c-section because I hadn't had one with our first son. Everything was going fine, despite my apprehensive feelings. Landon (Baby A) was delivered and other than having breathing difficulty due to prematurity,
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appeared to be fine. I got to peek at him quickly before he was whisked away to the NICU. Next was Olivia, Baby B. Her head was stuck under my ribs and once the doctor finally got her out, he wouldn't let me see her. I looked at my husband and he was trying not to show me by the look on his face what was happening. She was quickly passed to the doctors and nurses in the NICU when I heard the doctor say, "Looks like Baby B's got a cleft lip."
My heart froze. I didn't know what to do. I tried to visualize what she might look like. I was so worried about both of them being premature and I didn't know how this would impact the prematurity issues. Mike, my husband, went with the babies and I went to recovery.
During recovery I remember crying and thinking about the rough road that my daughter had ahead. I knew nothing about clefts. I had no idea if she would be alright. As I drifted in and out of sleep, I kept thinking that maybe I it was really just a dream and that both of my babies were really alright.
The first few days were very difficult. The doctors discovered while they were examining Landon that he had a microcleft and that his palate was intact. Both he and Olivia were on breathing assistance, but Olivia had a very hard time. Because her palate wasn't there, they couldn't intubate her. They couldn't get the tube down her throat because they had no palate to follow. They used another type of device that they were not sure would even work, but they taped it to her face and she began improving. We weren't allowed to hold her until she was 3 days old. I felt like she didn't know we were her parents. I was afraid that she was scared or in pain and I didn't know how to help her.
They both began steadily improving. We learned how to feed her with a NG tube and thought we would take her home with the tube. Amazingly, she did an awesome job with the bottle and we were able to take her home without the NG tube after all! After 2 1/2 weeks in the NICU, we took them home.
We began learning a lot about clefts after we took them home. The hospital hadn't been very helpful at all in giving us information and resources.
Due to insurance issues we were sent to Chicago, two hours away from our home, to a cleft team. Here is where we found wonderful doctors and people to help us understand what Olivia and Landon were going to face with regard to surgeries and treatment.
There are many things that no one could ever prepare us for. The stares and the questions that people gave Olivia were almost too much for me to handle sometimes. I found myself getting angry at first, but now I realize that most people that whisper and point are just doing so because they are uninformed. We feel so blessed to have three children that are healthy. They are so many other things that children have to face that are much, much worse.
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Olivia had her lip repaired on January 17th, 2003. She is doing great! When we were first brought back to the recovery room, we almost didn't recognize her. As other people have said, we missed her old smile. She has such a beautiful smile now!
Landon will have surgery on his lip to reattach the muscle that did not grow together. This surgery will be on March 21st. That will be his only surgery. Olivia will be having her bone graft sometime this spring and then sometime this summer her palate will be closed.
We know that we have a long road ahead of us, but we know that God is going to be with us all of the way. He definitely has a plan and a purpose and will use this to do mighty things in all of our lives.
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This cleftAdvocate page was last updated March 25, 2014
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