Connor Henry, Missouri Ambassador
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Connor Henry was born weighing a whopping 2 lbs. 2 oz. on December 22, 2001. Although tiny by most standards, Connor was quite large for his gestational age--he was born only 25 weeks into his mother's pregnancy in spite of good nutrition and prenatal care. He immediately required surfactant therapy and was placed on a ventilator to assist in his breathing as his family watched and waited. During his four month hospitalization in the NICU, Connor required a patent ductus arteriosis ligation (a heart surgery common in preemies), surgery for retinopathy of prematurity, and a hernia repair. But his most significant problem was his lungs--it took nearly two months to wean him from the ventilator, and those months had a price attached to them. Because Connor's lungs were not fully formed when he had to be placed on the ventilator, they were damaged by the very technology that had to be used to save him. The damage meant that he would have Chronic Lung Disease (CLD) until he could grow enough new lung tissue to offset the damaged tissue.
CLD turned out to have a lot of ramifications for Connor and his family. First, it meant that he would have to be discharged on oxygen and heart/lung monitors all the time. Even now as Connor approaches the age of two, he still requires oxygen at night as he sleeps. Even more significant, CLD forced Connor to put so much effort into breathing that he had to expend extra calories just to get enough air. This effort meant he needed extra calories. The combination of basically panting to breathe and having to be fed a high calorie diet as a result of his prematurity meant that Connor was at high risk for gastroesophagal reflux. He developed a raging case of it, vomiting 2-4 ounces multiple times per day. In fact, his reflux was so painful that he essentially learned that eating was associated with discomfort, and ceased eating altogether. He became 100% dependent on a feeding tube, and continues to require feeding therapy to re-establish his oral skills—both feeding and language.
Connor is fortunate in a lot of ways. He was born in a hospital with a Level III NICU that could provide excellent care immediately after his birth. He received surfactant therapy that no doubt saved him. He was spared any significant brain bleeds that might have caused more lasting damage. He appears to be following a normal developmental sequence (with the exception of feeding and language), albeit delayed. He is a delightful, congenial little boy.
Yet even with all of these blessings, the consequences of Connor's prematurity have been challenging. Preemies with reflux require small frequent feeds around the clock, and for the first sixteen months of his life, Connor had to be tube fed essentially 16 hours of the day. Trying to find caregivers to provide respite means training people on how to manage oxygen and feeding tubes. While thankful for the research that saved Connor, prematurity has had longer lasting consequences than we anticipated. We know first-hand the terror associated with a late night call from the NICU staff that your child is dying and it is time to come. We have experienced the strange mixture of relief and trepidation once it becomes clear your child will survive--relief he is with us and trepidation about what the future holds. And we know how desperately research is needed to prevent the long-term struggles associated with prematurity, and to prevent prematurity in the first place. |
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Volunteer Recognition and Awards
The Greater Missouri Chapter Honors its Volunteers with Awards.
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Connor Henry, Missouri Ambassador
Connor Henry was born weighing a whopping 2 lbs. 2 oz. on Dec. 22, 2001. Although tiny by most standards, Connor was quite large for his gestational age--he was born only 25 weeks into his mother's pregnancy in spite of good nutrition and prenatal care.
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