Adam Dwight Persels
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My son Adam Persels was born at 28 weeks gestational age on February 11, 2000. Adam had a hard time breathing even intubated and ventilated. With positioning the tube and lots of drugs he settled in with the occasional scary broncospasm.
Weeks passed by and when it was finally time to try extubation. He worked hard, but lost the race... this happened four different times. They decided to scope the trachea and see what was up. They suspected tracheal malacia, but after the scope, the doctor said he surely did not expect to find what he found---a "cyst-like" ball of tissue blocking the airway very low, at the carina (the point where the trachea branches out to the lungs). It seemed that while the ET tube was in place it pushed the tissue out of the way, but as soon as it was removed, the airway was blocked.
Our ENT Doc suggested we wait and let him grow before trying any procedure, as he was only 3 pounds at the time. We waited a few months and tried a laser surgery to remove the tissue, it worked, but scar tissue grew back in it's place and made things even worse. The next step was to try a series of "tracheal stretches" with an angioplasty balloon to open that area. Over a period of 6 months we tried that, with no luck in the end. The final step, when Adam was 8 mos. old, was to do a surgery which none of the doctors at our Children's hospital had done, and it was known to be somewhat successful with adults but not children, especially a baby... The surgery was a "tracheal reanastomosis", which means to open the chest, put the child on a heart-lung bypass, and cut the bad part out of the trachea and then reconnect it. We were all so scared, but it was the only choice for Adam to live without a tube in his mouth to breathe. The surgery was a TOTAL success, and to this day when they scope him, they have a hard time finding the suture site from that surgery. Miracles do happen.
Since Adam had not breathed for himself for all of those months, all of his breathing muscles were not working well, and he needed to be trached. It was the best thing we did for him, as he felt freedom from the ET tube and blossomed! He spent his first year of life at Primary Children's Hospital in the NICU, and came home 2 days after his first birthday. He was on a vent for his whole second year and weened off by his 2nd birthday. He is currently still trached and is working on capping (Sept. 2002) Adam is the happiest child and his father's and my greatest blessing. We are absolutely in love with him.
