Hello, my name is Amy T. Smith. I am the proud mother of a little girl named Sarah who was born 3 weeks premature. Needless to say I was ready to get the pregnancy over with, but, I was not prepared for what my Obstetrician told me, when my daughters head emerged.

My doctor told me, as he was suctioning my daughter's airway, "Your child has a cleft palate". I had remembered reading in my encyclopedia years before about cleft palates. I assumed that would mean that my daughter would also have a cleft lip. I didn't know that a child could have one and not the other. When the doctor handed my child to me, I was in tears saying, "There is nothing wrong with my child. Her face looks just fine". I was on Demerol, so I was thinking, 'what a cruel joke to play on someone!' But just as I started smiling at my beautiful little girl, they whisked her away, saying, "She's blue, get her some O2, she's blue". I immediately went berserk. I was in total disarray without any knowledge of what was going on.

The next thing I remember was being woken up by my daughters Pediatrician. Dr. H was accompanied by another doctor whom I was not familiar with. Dr. H. said, "Amy, your daughter is doing fine. She is resting comfortably in the nursery. She scared us for a minute, but, she is doing fine now". I asked him, "Why would my OB/GYN tell me she had a cleft palate when she doesn't"? Dr. H. was confused, he said, "She does have a cleft palate. She has a condition called Pierre Robin Sequence, which means she has a cleft palate, with no lip involvement. She has a very small lower jaw, which is causing her tongue to roll up into her airway causing her to stop breathing."

I was in shock. I didn't know what to say or do. Sarah's pediatrition continued to explain, saying that the other Dr. with him was a Pediatric Plastic Surgeon. This Dr. explained the details involved in future surgeries for Sarah. Dr. H. also told me that it was unlikely that I would be able to breast-feed her, but that didn't mean that he didn't want me not to try. He just wanted me to know ahead of time, so I wouldn't be so frustrated. Twenty or so minutes later, the nurse brought my daughter to me. "Oh, she is so beautiful". That is all I could say. She had bright red hair, and big blue eyes. She was a big baby too weighing in at 7 lbs. and 14 oz. (That was 3 weeks early too). Thank God she was ready to be born then. I don't think I would have survived her coming any later than that!

Anyway, the nurse said, "Let me help you try breast-feeding her. Because of her tongue being back placed, I would like to monitor her in case she has any breathing difficulties". This nurse was a God-send. Sarah almost immediately turned blue. It frightened me so much. The nurse was very calm though. She said, "Don't you worry. She is gonna be just fine".

Later that evening, Dr. H. came in to tell me that they were moving Sarah to the NICU. That she was having difficulty breathing, and the nursery wasn't adequately equipped to handle an emergency should one arise. In the NICU, they had Sarah hooked up to all these machines. She was breathing all right as long as she lay on her stomach.

Her blood work came back with the Group B Strep infection. I had read articles about children dying from this exact infection so of course I went off the deep end. The nurse calmly stated that Sarah was fortunate not to be seriously affected by the infection. She did however develop Strep. Pneumonia from breathing in amniotic fluid during birth, but the antibiotics that they infused in her would clear that right up. So, the nurse was right, Sarah doesn't seem to have been adversely affected by the infection.

After 11 days of being in the hospital, Sarah was holding O2 well enough that they let us take her home. She came home with a monitor for us to keep a check on her because of Sleep Apnea. She did very well at home though. She was off the monitor at 4 weeks old. Her Pediatrician said she should be on it at least 6 months, but not my little girl. She was very determined. Just like her mommy. She slowly gained weight. She was on weekly weigh-ins because of her failure to gain weight. But, she eventually got up to the 10th percentile so they let us come in monthly.

She had trouble with the Haberman bottles, so we switched her to the Mead- Johnson Cleft Palate bottle. Sarah liked this one much better and so did we - we felt like we had more control over the feeding that way. Sarah developed slightly slower than her brother, but faster than other kids. She was 8 months old when she cut her first tooth. She was 10 months old when she started crawling.

She had her hard and soft palate repaired at 13 mo. old when she weighed 19 lbs. and 4 oz. She was unable to breathe on her own after the surgery because of her airway swelling up. The surgeon had to induce Coma and keep her intubated until she was able to breathe past the air tube. Her swelling went down within 36 hours, so the extubated her.

She was already off her bottle and on a cup, so she was ready when she came off the medication to have a drink. Having her off the bottle helped her tremendously. That night she drank 14 oz. straight down. The next morning, she had a good BM and her doctor said, that is all I wanted to see. You can take you little girl home. I was thrilled! I knew she would heal better at home, rather than the hospital.

Approximately 1 week after her surgery, she started walking. She also developed a large fistula (hole in the surgical site) in the arch of her palate. She was in a lot less pain after the fistula formed, so I am guessing her body knew what would make her feel better. To this day, she still has the fistula. It doesn't seem to have closed much at all and she will be having outpatient surgery to close it in a few months.

When Sarah was 2 years old, she was diagnosed with Sticklers Syndrome. We had her vision checked because she leaned so close to everything. When a family history was taken, we found that my mother's side has almost all of the markers for Sticklers Syndrome. My mother herself had just had her eye lenses replaced due to congenital cataracts, which were not discovered until after Sarah was born. Sarah also has developed a congenital cataract, but thank God it is in the peripheral vision of her left eye. Sarah has 'lazy' right eye, so we had to get another lens prescription to see if that helps her. If not, then we will have to start patching the good (left) eye to exercise the lazy (right) eye.