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01-22-2007, 05:16 PM
[left:d2a5f20430]http://www.cherubs-cdh.org/Album/new/wilson-h.jpg[/left:d2a5f20430]Hunter was born a full-term baby. There were no indications that anything was wrong until he was born. He weighed only 5lbs, 2 ounces---this is not much considering that mom is a large-framed woman---6' 2 1/2". When he was born, he was malnourished and dehydrated. The doctor said that it looked like the placenta had "calcified" 3 weeks before. He couldn't cry, and this was the first indication that there was something wrong with Hunter's lungs. The family was permitted to visit him, for they thought that he would probably not survive the trip over to, LeBonheur, the children's hospital in Memphis, TN.
Miraculously, he did survive, and in a few hours we received the word that Hunter was born with a diaphragmatic hernia. The diagnosis was a real shock; none of the family had ever heard of a diaphragmatic hernia before. Nitrous Oxide proved to be futile, so 12 hours after his birth, he was placed on ECMO. He remained on ECMO for 10 days. The doctors felt that his lungs could have benefited from a longer stay on ECMO, however Hunter developed a brain hemorrhage and had to be removed from ECMO. Three weeks after he was born he had his first (and hopefully only) surgery to repair the hernia (Gortex patch). During the surgery, the full extent of the hernia was revealed: a 70% hernia on the left side. At two and a half months, Hunter had the Nissen surgery to help prevent reflux, and he had a "g" tube inserted. When he was almost 4 months old he came home for the first time for 6 days. He was in respiratory distress and was admitted back to the hospital because of dehydration. Ever since, he has been in and out (mostly in) with numerous infections, pneumonia, and hydrocephalus. January 8, 2000 he had a trach put in. We had hoped to avoid this, but it was decided that using a trach would be in his best interest. At eight months, Hunter now weighs 15 pounds. We can't believe how much he has grown! Initially we were told that Hunter could have his cleft lip and cleft palate repaired at 10 pounds. He has gained 10 pounds since birth, however, the surgery to repair his cleft lip and cleft palate is being delayed due to pulmonary hypertension, which is the major obstacle we are trying to overcome at this point in time.
Whenever Hunter is experiencing discomfort (i.e. gagging, gas pains, or bowel movement) he goes into distress---breaks out in a sweat, and respiratory and heart rate rise. When this happens, he must be removed from the respirator and "bagged" at 100% Oxygen. We are wondering if any other "CHERUBS" have experienced this same sort of distress? We are interested in communicating with any and all CHERUBS and their families.
Written by Hunter's family, mom Amy Wilson, grandmother, Cindy Ball and aunt, Cindy Ball (Arizona)
2000
Miraculously, he did survive, and in a few hours we received the word that Hunter was born with a diaphragmatic hernia. The diagnosis was a real shock; none of the family had ever heard of a diaphragmatic hernia before. Nitrous Oxide proved to be futile, so 12 hours after his birth, he was placed on ECMO. He remained on ECMO for 10 days. The doctors felt that his lungs could have benefited from a longer stay on ECMO, however Hunter developed a brain hemorrhage and had to be removed from ECMO. Three weeks after he was born he had his first (and hopefully only) surgery to repair the hernia (Gortex patch). During the surgery, the full extent of the hernia was revealed: a 70% hernia on the left side. At two and a half months, Hunter had the Nissen surgery to help prevent reflux, and he had a "g" tube inserted. When he was almost 4 months old he came home for the first time for 6 days. He was in respiratory distress and was admitted back to the hospital because of dehydration. Ever since, he has been in and out (mostly in) with numerous infections, pneumonia, and hydrocephalus. January 8, 2000 he had a trach put in. We had hoped to avoid this, but it was decided that using a trach would be in his best interest. At eight months, Hunter now weighs 15 pounds. We can't believe how much he has grown! Initially we were told that Hunter could have his cleft lip and cleft palate repaired at 10 pounds. He has gained 10 pounds since birth, however, the surgery to repair his cleft lip and cleft palate is being delayed due to pulmonary hypertension, which is the major obstacle we are trying to overcome at this point in time.
Whenever Hunter is experiencing discomfort (i.e. gagging, gas pains, or bowel movement) he goes into distress---breaks out in a sweat, and respiratory and heart rate rise. When this happens, he must be removed from the respirator and "bagged" at 100% Oxygen. We are wondering if any other "CHERUBS" have experienced this same sort of distress? We are interested in communicating with any and all CHERUBS and their families.
Written by Hunter's family, mom Amy Wilson, grandmother, Cindy Ball and aunt, Cindy Ball (Arizona)
2000