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Chris

My name is Kim Zavala, and my husband Jorge and I are blessed with four sons. Alex 19, Nick 13, Chris 11 and Ben 10. Chris was diagnosed with Primordial Dwarfism with Microcephaly in September 2000, by Dr Charles Scott, at Alfred I DuPont Hospital in Delaware. That diagnosis changed our lives. Prior to that, we had been on an exhaustive 2 year search since Chris’ birth, to figure out why he did not grow. At birth, he weighed 3lbs 9oz, and was 17 ½ inches long.  

My pregnancy was uneventful until at 36 weeks, I developed a severe bladder infection that raised my blood pressure. I was to be hospitalized at Women’s and Children’s Hospital in San Antonio, overnight for observation, and sent home the next day. During the night, my water broke. Christopher was born 4 hours later on May 8 of 1998 and immediately placed in the NICU. Breathing issues had him in an incubator for the first week. The Nurses and Doctors said things like "Severe IUGR", "Mental Retardation" and at one point insisted I must have done drugs during my pregnancy because "babies don’t stop growing in utero for no reason". I was mortified! Chris was poked and prodded so much; they blew all his available veins, and eventually had to use the one in his forehead. Feeding was a constant battle. He ate well, just 1 oz at a time, but the staff insisted he eat 3 to 4 oz at a time. I was told if he didn’t eat at their rate, he would need to have an NG tube inserted. So I began spending all day there, feeding him. I would leave to work my evening job for 4 hours, and returning at 11pm for his feeding. Only to show up again in the morning to find Chris with a tube in because he wouldn’t take the allotted ozs or would take them only to throw them up. They began giving him medication (Propulsid and Zantac) for vomiting and for his breathing issues. The only bright spot at that hospital was our nurse, Laura! She worked the overnight shift, and when she was on for the evening, she had patience and would work with Chris. However, when she was off, other nurses would tube him. Against medical advice, we withdrew Chris from the hospital at 55 days, and immediately began working with our Pediatrician to care for Chris.

Chris was in and out of the hospital for the next two years. Every time he caught a cold, it ended in RSV. At 9 months he was diagnosed with Asthma, and began inhaled medicine. Chris did grow, just well below the growth curve. During his first two years he was tested for a metabolic deficiency, Cerebral Palsey, Glandular Disease, and Bloom Syndrome. In the end, they diagnosed him "Failure to Thrive". He did thrive, though at a much slower rate than the average child

A friend of mine in Houston, TX read an article in her newspaper about a woman named Jennifer Marcello, and her daughter Taylor. My friend was flabbergasted as Taylor could have been Chris’ twin sister. The facial features were remarkably similar. I contacted Jennifer, and she referred me to Dr. Charles Scott at DuPont Children’s Hospital, in Delaware. We saw him in the Fall of 2000, and finally had our answer!

Today, Chris is 11 and in the 5th grade. In March of 2009 Chris was diagnosed with profound Dyslexia, which we have now attributed to his delays in school. His IQ is slightly above average, and he has excelled in art. He has already recreated the Mona Lisa in pencil! His dream is to become a professional artist.

We have attended two LPA conventions and have met many people in the Primordial Dwarfism community there. The Potentials Foundation has been invaluable in helping us to connect with others. He was very proud to be the tallest attendee at the NYC LPA convention this year. He is currently 47 inches tall Chris is a joy to be around and enjoys hanging out with his brothers and the youth group at our Church. We welcome communication with other families and can be reached at ZAVALAES@aol.com.