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Michelle

Finding out your child is born with a birth defect is one of the hardest things anyone can imagine going through .

When I got pregnant with my third child, I was happy. Everything was going great for myself and my unborn baby. Until the day I found out he was going to be born with a birth defect. I was about five months pregnant and had a normal ultrasound done when my doctor said she wanted to send me for a stage 2 ultrasound. She thought she saw something on my baby and wanted a better look. At first I thought there couldn't possibly be something wrong with him because I had two children prior that were fine. So as always, I went on with my normal activities until the day I had my stage 2 ultrasounds done.

The doctor began to check the baby. And told me the baby was doing great and developing well. He told me the heart was fine and he was a good size. I was so happy with the good news and was thinking to myself, "I knew nothing was wrong with my baby!" Then the doctor said to me, "your baby is doing fine and is growing at a normal rate but we found a problem." I looked at the doctor and asked him what it was and if my baby would be ok? The doctor showed me the baby on the screen and said he would be born with a birth defect called the cleft. He began to tell me that he will have the complete bi-lateral cleft lip and cleft palate on the left side of his face. I had no idea what he was saying. I began asking the questions that any parent would ask. "what is that?" and "is he going to be ok?" The doctor insured me that everything was going to be fine. He would need surgery to correct the problem when he gets older. At that point I was crying and wondering how this could have happened to my baby. The doctor told me that everything would be fine and that my child would be like any other child. He could do what anyone else could do.

When I was done I went to the car where my mom had been waiting for me with my other two children. She asked me what was wrong because I was still crying. I told her that the baby was going to be born with the cleft. She asked me what that was and I explained to her what the doctor had told me.

Time went by and on Thanksgiving Day, November 26,1998 just as we were about to sit and eat dinner with the family, my water broke. We rushed to the hospital. About 5 ½ hours later I had my son. The doctor got him all cleaned and prepped for me to see him. I looked at him in shock because I had never seen anything like that before and didn't know what to do. (as if I was afraid of him or something.) the doctor wanted to see if he was able to eat because some babies born with the cleft cant suck on the bottle. The nurse showed me how to feed him and he was drinking as if he never has anything wrong with him. So they allowed him to go home in three days. That was the start of a long rough road ahead.

We named him Thomas because he was born on Thanksgiving, he got the nickname "Tom Turkey." Everyone was so happy to see him when he got home. I was afraid they wanted to see what he was born with, so I got upset. I realized they were there to see him and not his cleft. They were looking past the hole in his face and looking at him as if he was perfect like any other baby. I realized it was just me.

Tommy was home and doing well when all of a sudden he was drinking water and stopped breathing. I yelled to my mom, who was in the other room, that he was turning blue. She came running in the room and took him out of my arms and told me to call 911. By the time I got off the phone with them, the emergency team was at my door and he was breathing again. they took him to the ambulance and went to the hospital. When I got there they did all these tests on him and said he had a mucus plug. When I was feeding water, it loosened up and got lodged causing him to stop breathing. They told me thatif it wasn't for my mom doing what she did, he wouldn't be here today. We went home that same day and Tommy was doing well.

Then the horror started again! Tommy was now 2 months old and went back to the hospital in the NICU for failure to thrive. This meant he was unable to eat. He had forgotten how to suck on his bottle which caused him to lose to much weight. He was there for one week and we had to learn how to feed him all over again. he gained weight and was sent home again. we went to the doctor for a follow-up and they told me he was at the right size and weight to get his lip repaired.

Four days later we were back at the hospital getting surgery to repair his lip. When it was done they came to get me out of the waiting room to see him. He didn't look like the same baby I had brought there. His face was swollen, and he had wires on him. I was scared for him. I didn't know what to do because all he would so was cry because he was in so much pain. He stayed in the recovery room overnight and came home the next day. it was hard to take care of him when he came home because there was a lot that had to be done. I also had two small children to take car of too. Tommy was doing well so the doctor told me he could get his palate repaired soon.

At 9 months old he went in to have that done. By now I had become a pro at taking care of all this. He has been going to the doctor once a year so they can look at his progress. He has to see about five different doctors when he goes there. He has to take speech therapy. Children with the cleft usually have hypernasal so they talk through their nose instead of their mouth. Therapy improves his speech and teaches him how to talk through his mouth.

Tommy is now 6 ½ years old and has come a long way with his surgeries and therapy.He will be getting bone grafts to repair the bone that is missing in him mouth so his teeth will grow in better. Then he will need braces. His lip looks good but he has some scare tissue that the doctor wants to do touch up work to make him look better. He knows what he had when he was born because we have a picture of him. He used to ask questions about it. When someone asks him what he was born with, he tells then and seems happy about it. The only downfall is he doesn't like to go to the doctor all the time because he doesn't like them touching his lip. I tell him he has to go until he's 18 because he's living with me and I wont let him miss an appointment.

Tommy loves to do all kind of things. He wants to play football but I'm afraid that if he does and gets hit in the face, it will do damage to him, he doesn't understand that yet. He loves to work on cars with his dad and says he's going to drive a race car when he gets older. He enjoys watching races on TV and wants to be like Dale Earnhardt. Hopefully his dream will come true.

Comments

sad story :(

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