One Of This Month's Featured Families!
Bilateral Cleft Lip and Palate
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In August 2001, my husband and I found out we were pregnant. Then in October we found out we were having twins. On Saturday, 23 February 2002 Christopher and Thomas Marsiglia were born in Okinawa, Japan. Christopher was born first and Thomas followed six minutes later. Christopher was born with everything "formed normally," but Thomas was born with a bilateral cleft lip and palate. He spent 24 days
Marsiglia Family Story - The Story of Thomas
in the NICU because he was six weeks premature and because of his cleft. At the time we were living overseas because of my husband's job in the Air Force. Since Thomas' situation was somewhat unique he had to immediately start working a new job assignment so we could return to the United States in order to have surgeries to correct his lip and palate.
When Thomas was first born, the doctors and staff in the delivery room didn't act like anything was wrong with him when they held him up. Since he was the second one out, I was too tired to really notice the deformity but my husband was immediately concerned. They scooted him to the side just like they had his brother Christopher, in order to check him out and make sure he was breathing okay on his own. When they handed him to me I immediately knew something wasn't right and looked at the Neonatal Intensive Care Unit (NICU) nurse and my husband. She began explaining things and I became quite emotional and worried. My husband had always voiced his worries about having a child with some sort of disability or deformity and had always said he didn't know if he
could handle a situation like that. I knew this and it was all I could think about. After they took him to the nursery I asked him if he was okay with the situation and he replied, " I don't care about what he looks like. He is my son and I will love him no matter what." To this day they are buddies and my husband has learned that he can handle whatever the Lord sends his way.
We, like most people, had not heard or seen a cleft affected person or child. This made the first 24 hrs very hard on both of us. I cried myself to sleep that night. The next day, we started asking more detailed questions and trying to find answers. At first we thought it
might have been something I did, but they quickly informed us that it wasn't. They also started reassuring us that it could all be fixed and that he would be able to lead a normal life. This was very comforting.
We went through a lot of hard times trying to learn how to feed him. The hospital in Okinawa had not seen many, if any cleft lip and palates, so the people there were learning with us. They also didn't have a speech therapist that knew much either. This made life very difficult. I'd have to say that I spent many days and nights thinking I couldn't make it. In fact one night I got so bad that I got online and sent a message to Cleft Advocate. Many people responded wonderfully and it helped to know that
some other people had experienced the same things I was experiencing like crying while trying to feed and throwing it all back up. We survived and got to the states on Father's Day, June 16th. We immediately had to find a home so we could get our insurance started up and get Thomas into a doctor. This took a few weeks, but we finally got him into Riley Children's Hospital at the end of July.
He had his first surgery on 22 August to repair his lip. I had been forewarned to look at other children's pictures and to expect Thomas not to look like himself after the surgery. I had had six months of looking at Thomas with his cleft lip and at the time had actually thought about not having it repaired because I had grown so used to his looks and thought he looked good. He had become "normal" to me. Of course, reason prevailed and I knew it was in his best interest to have it repaired, so we did. On the day of the surgery, I had a very difficult time letting the nurse take my baby out of my arms knowing that he was never going to look that way again. Then the three-hour wait took forever. When they finally came out to take us to the recovery room I could not get there fast enough. I wanted to hold and comfort him. I did not want him to be too scared when he
woke up. As soon as we got next to him the nurse handedhim to me. I was a little disappointed because I could not really see his lip as they had placed tape on his face to help relieve some of the pressure on the stitches. So the shock wasn't too bad then. That night I stayed with him and he would not sleep. He cried and moaned all night long. It was so pitiful. At times I cried too.
The next day we took him home, and the first two weeks were hard. It was especially hard since we had to take him back a week later to have the doctors put him under anesthesia to remove the stitches. The first time I saw his face I cried. I couldn't believe how wonderfully beautiful he was. He looked so much more like his brother, Christopher too. WOW! What a difference! After that day he really got cranky as the stitches were making him itchy. A couple of days later he calmed down and started eating really well again.
The last six months have been trying and we know
more challenges still lie ahead for us. We are
sustained by our faith in the Lord who we know has
been there all the time. He has been truly good to us and I thank Him for everything; and especially for Thomas and Christopher.
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Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014