Seth Adam Williams
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My son, Seth Adam Williams was born August 18, 2000. He was born prematurely at 34 weeks, and delivered by cesarean because of IUGR. He only weighed 2 lbs 10 oz. and measured 15.5 inches long. He was breathing room air, and receiving small amounts of oxygen during the first five weeks of life. When he was five weeks old, he began to have trouble breathing, and his sats were dropping rapidly. He was intubated and transferred to Children's Hospital (In Oklahoma City, Oklahoma). He was extubated within a week and did well for another week, then his heart rate dropped, and he had to be resusitated. He was on CPAP for awhile and then the doctors realized that he had some anomalies of Pierre Robin, but he was not actually diagnosed with it. His chin was recessed and his air passage was very small, when he would get angry his tongue would flop to the back of his mouth and his air passage would get so small and blocked that he could not breath. Dr. Panchal (the plastic surgeon at Children's) evaluated Seth and decided that a jaw distraction surgery might work for Seth. The day of the surgery, Seth was only 3 pounds and around 2 months old. The surgery failed because Seth's jaw bones were so small and fragile, the bone shattered when Dr. Panchal started the surgery. Seth then had to recover from that failed surgery and be on the vent for about 2 weeks. When they finally extubated him and tried him on an oxygen hood, he only lasted 24 hours this time without having to be resusitated. The last resort was a trach. The surgery was done in October, 2000. He finally was able to come home on December 18, 2000. He has been pretty healthy since coming home, although he was diagnosed as "failure to thrive." At 13 months old he only weighs 11 pounds 9 ounces. He is growing, just very slowly. He is getting closer to decannulation, hopefully. He can breath on his own almost half the day with the obturator plugging his trach. Dr. Panchal hopes to not have to perform the jaw distraction surgery, and to try decannulation within 3-6 months!
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Update March 2002: I just wanted to let you know that Seth Williams' decannulation was successful, (Friday March 1.) So far so good, other than a little snoring at night, and a little head cold! Thank you for your site and all your information, it has been so helpful!
Sincerely,
Elizabeth Williams
