Cleft Advocate - Featured Families - March 2002

The night before his surgery I found myself saddened by the fact that he would no longer look the same. I even found myself questioning whether or not to go through with the surgery. As you can tell we went through with the surgery, but I went into the first surgery with one major fear. One, would I recognize my son after his surgery. The fear of being able to recognize Rylan comes from the fact that we had grown to love him just the way he was. When we looked at him we didn't see the cleft. Rather we saw a child who we loved unconditionally. Rylan's first surgery was a major success. And my fear diminished the moment I saw him.

Spending 7 days in the NICU helped me to put Rylan's cleft into perspective. He spent 7 days surrounded by babies that would never go home. I saw parents that had to say good-bye to their babies before they really got to say hello. Rylan's cleft is such a small part of who and what he is.

My son Rylan was born March 30, 2001 with a

bilateral cleft lip and palate. Luckily we found out

about the cleft during our 20 wk ultrasound. I say

luckily but finding out that our son was cleft came

with some really strong mixed emotions.

Guilt, sadness, insecurity, and fear of the unknown

were just of few of the first emotions I began to go

through. Guilt, because I felt I needed someone to

blame for my son's cleft. So initially I thought that

since I was carrying him I had to be the one to

blame. But in the back of my mind I knew that

I had taken every precaution during my

pregnancy - prenatal vitamins, no smoking, no

drinking, eat right, rest plenty and moderate

exercise. Sadness, there was a sense a

sadness that overcame me when I first found

out. I had wanted the 'perfect' child. Insecurity,

I was already insecure about being a mom, and once I found out Rylan was cleft I began to question whether or not I could feed and take care of my son. Fear of the unknown, I had never heard of the term 'cleft' prior to having my son. I was ignorant about what a cleft was, what caused a cleft, and how to care and raise a cleft child. I felt as if I needed mom/cleft 101. Rylan is my first child and only child and now that he has been in our life for 11 mths I can tell you he was God sent.

For the next 20 weeks I would spend my time becoming familiar with children affected by clefts. I will be the first to admit that it was a major learning experience. And I was scared. Terrified is more like it. First I gathered as much information as possible. I began to seek out doctors, support groups, web sites, and other families who had similar experiences. Once I gathered all of the information, I began to sit down and go through it all with my husband. We read the documentation, looked at the web sites, contacted the organizations and the local hospitals.

Secondly I began to share that information with my friends and family. I felt compelled to make sure everyone was as educated about my son as I would be. He would need a special bottle, he would run a greater risk of colic, he was prone to ear infections, and he would look different.

This Month's Featured Family!

March 2002

Rylan, bilateral cl&p

Born March 30, 2001

Missouri

We brought our son home and we began to feed him with the Haberman feeder. During the first 8 weeks Rylan's feedings would take anywhere from 30 to 45 minutes. I was a bit hurt by the fact that I couldn't breastfeed. Part of me really wanted to try. Rather I pumped for 6 weeks. That was the hardest 6 weeks of my life, but well worth it for Rylan.

We met with our plastic surgeon and he laid out the schedule he would like Rylan to be on. First surgery (a lip repair) at 8 weeks, the second surgery (another lip/nose repair) at 6mths, and then the soft palate repair at 13mths. The first 8 weeks of Rylan's life came and went before I knew it. I began not to even notice that my son was different. To me the cleft was part of who he was; it was part of his charm. As you can see he is quite the charming young man.

Rylan was here before I knew it. Once he arrived it happened, all of those initial emotions went flying out the window. This baby had 10 fingers, 10 toes, a lot of hair, and big beautiful eyes that would speak to you. He had my heart and soul from the first time we touched. Rylan spent 7 days in the NICU, due to breathing complications. As you can see while in the NICU he had a feeding tube.

During Rylan's first surgery he had two major things happen to him. One his lip was 'pulled together' and he was fitted for an obturator. The

first surgery changed Rylan dramatically. I had

no idea what to expect with the first surgery, and it is an understatement to say we were pleased

with the initial results.

Rylan's first surgery happened during the his first 8 weeks of life. His second was to take place once he became 6 (November 28, 2001) months. I my initial thoughts were it would take my son forever to turn 6 months. Once again I was wrong. It was like I turned the corner and Rylan was turning 6 months. Once again I found myself the night before questioning whether or not to go through with the second surgery. The second surgery was to consist of 'tweeking' the lip. The second surgery would not include anything else - no tubes for his ears and no soft palate repair. I began to feel as if it was unecssary for me to put

him through the pain again when he already looked so good.

Rylan came out of the second surgery looking very similar to the way he looked when he was wheeled out from his first surgery. The feeling was oddly familiar to me. With the second surgery I was very saddened by the fact that I had subjected him to the pain all over again. But with Rylan in my life I begin to find out what other parents mean when they say 'Children are resiliant'. My son was once again amazing. He was on his regular eating schedule within 1 hour of getting out of surgery. By the time one week had passed he was back to being old Rylan.

We attended Team Review on February 8, 2002. During team review it was decided to schedule Rylan's soft palate repair for May 8, 2002. Along with the soft palate repair they will schedule an ENT to put tubes in Rylan's ears. Essentially we will have encountered 3 surgeries in approximately 14 months. I am already beginning to prepare for his surgery in May. Preparation for me entails drumming up support from friends and family, speaking to my husband about my fears and concerns and taking as many photos of Rylan as possible. Please keep us in your prayers.

And may God bless each of you.

Michelle