TrachKids.org

TrachKid Profile

Nathan was born at 38 weeks after a long, complicated pregnancy. He was born by c-section because he had an unkonwn birth defect. Immediately after birth he was whisked away to the NICU to determine what was wrong with him - and so began our waiting. An hour later they had our answer, the answer we'd been waiting months and months for - a TE Fistula with long gap esophageal atresia. He was going to have surgery in the morning.

The surgery the following day went OK, he made it through and his trachea was repaired. The surgeon came to my room and told us that never in his 20 years of experience had he ever been so suprised by a surgery - not anything a parent ever wants to hear. He was unable to repair his esophagus because the gap between the two ends was the biggest he (and the NICU doctor) had ever seen. We waited a while, until after he healed from surgery, and they began to stretch his esophagus in hopes of one day reconnecting the two ends.

Eight weeks later and they finally felt like he was ready for his reconnection surgery. The two ends were close enough together that they thought they could get them to meet. He would have surgery in a week - and it was going to be a big one. He made it through the surgery. After a week of being medically paralyzed so he wouldn't risk ripping the site they had just carefully sewn together he was woken up and extubated, and we heard it. He had the loudest high-pitched squeak I'd ever heard and it was every time he took a breath. After a week of his doctor telling me it was normal and the sound would go away I requested an ear, nose and throat doctor be brought in to look at him. The results were that during his repair surgery his vocal cord nerve had been damaged and the result was paralyzed vocal cords, bilaterally. He would need a trach, maybe.

The doctor wasn't sure, he said that he was keeping his oxygen up on his own and might not need one. We needed to know for sure. He was transferred to Boston Childrens Hospital and they agreed, he needed a trach. He got one the next day and has never been the same. He is now the happiest little boy I've ever seen.

The trach is supposed to be temporary, it is only supposed to be in for 2-4 years at the most. They want to do another surgery to open his cords so that he will no longer need the trach. Since the trach Nathan has come alive. He's had it since March of 2007 and it was the best decision we've ever made for him. After spending 20 weeks in 2 different NICU's he finally came home. He's bounced in and out of the hospital since he came home, but he's finally settling in to being home for longer and longer periods of time. He's almost developmentally appropriate but still a little behind in most areas. He can't yet tolerate the speaking valve but being only 13 months old we didn't expect him to just yet. He can keep it on for a few seconds at a time so when he does try to wear it it's nice to hear his little voice.

• Gender: Male
• Demographic Region: North America
• Siblings: None
• Medical Conditions: duodenal atresia, Tracheoesophageal Fistula, Long Gap Esophageal Atresia, Single Kidney, Malrotation of Duodenum, GJ-Tube

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Member for

3 years 7 weeks

Location

Country

United States

State/Province

New York