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Chloe – Born 25 April 2011

Chloe was born the day after Easter, 5 days before her due date and all it did was rain. She was beautiful and I never thought anything was wrong. A pediatrian came and gave her a look over. They informed me that she had a cleft palate. She was also small for gestation.  I had never heard of such a thing. They tried to feed her using a Haberman. It was unsuccessful, so she was transported to a bigger hospital with a NICU. I cried all night from our separation and in the next days she was seen by many and tests were ran.

My husband and I stayed near the NICU and learned to feed her. She first had a feeding tube, then we used the mead Johnson cleft palate nurser. We went home 5 days after her birth and were surprised and thrilled to have her home that soon. Not long after her chest started caving in. I knew it wasn’t right. I showed the pediatrician whom said to position her at a slant. I did so and mentioned it at other times. She would spit up a good portion of her feeds and was failing to thrive. Yet, we were still told nothing was wrong. We took her to the craniofacial clinic where we were informed that she needed emergency jaw distraction.

They wanted to admit her but we refused. She had been home for nearly 2 months with recessive breathing. Right away we saw dramatic changes with just knowing how to position her. We were happy that we took her home. It was at this time we found out she had PRS. A few days later Chloe had jaw distraction. Surgery was successful and she was intubated for a week. They took her back to the operating room to extubate her and everything went perfect. She went home 2 days later a totally different baby. She was happier and thrived. She had her distractors removed two months later and ear tubes placed in her ears. She had constant ear infections that we treated with drops and mostly let go.

They put her on special formula and she battled slow weight gain. Her calories were increased and she had cereal in her bottles to hold the formula in her stomach. At 10 months old she had cleft palate repair. Full bilateral cleft. She stayed overnight and recovered quickly. At a year she still gained weight slowly so they put her on 3 nutritional supplements a day. Right now she is still on that prescription and stays on the chart at 5%. Chloe has also been genetically tested. Nothing has been found indicating the presence of other syndromes. She has no chromosome changes.

Chloe’s paternal grandfather was born with a cleft lip. But, we have found that it has nothing to do with PRS. Chloe also has a sister without PRS. Chloe is a happy, perfect 2 year old. She is delayed in speech and continues therapy. She has made me a stronger person and has taught me so much. I wouldn’t trade her for the world. She is my sunshine.