Our beautiful baby boy, Drew Kai, was born full term on May 18, 2011 after an easy labor and delivery. He was 9 lbs. 5 oz., 21.5 inches long and thriving. After a short, uneventful stay at the hospital we arrived home to begin a normal, rather mediocre life. I left my position as a director for a before and after school program to stay home with Drew and Alexis (our five year old daughter). We had a regular summer filled with family activities and spending time outside. Drew had regular checkups at the doctor and had no apparent red flags to his disorder. He was an active and aware baby boy. He loved bath time and was a “talker.” When his sister was close to him he would open his eyes and look around for her, waiting for the kiss and cuddle that was readily available. Drew continually gained weight and was always hungry. He nursed well and had no problems with his appetite. I couldn’t have asked for more. Our home was filled with love and we felt peace at how our lives were.

After a day trip out of town, our lives were turned upside down. After being misdiagnosed with acid reflux after his first seizure we were left with more questions than answers until we finally received his diagnosis; nonclassic homocystinuria with a cobalamin defect. The seizures affected his ability to breath and the toxicity in his body, along with a complete depletion of B12 in his body caused severe cerebral atrophy. After being placed on a ventilator Drew slowly recovered from the initial symptoms of his disorder. However we were always warned that the damage and trauma done to his brain could not be reversed and may be causing the breathing problems. We waited patiently for two weeks while his enzyme levels stabilized and his body adjusted to the seizure medications. We decided to have surgeons give Drew a G-tube to aide in feedings and giving his medications. The day arrived when they decided to take the breathing tube out. We were absolutely ecstatic.

They removed the breathing tube at 9:30am on August 26th, 2011. He breathed fine and was only slightly uncomfortable but after less than an hour, he began the same breathing pattern that originally caused him distress. Our worst fears had come true. The breathing problems were not only associated with seizures but the damage done to his cerebral tissue was so severe that he could not coordinate his muscles to breathe. We waited, hoped and prayed that he would be able to establish a healthier breathing pattern but the time came, late that night to make the hardest decision of our lives. The doctors told us that if we decided to intubate him again, they would, however he would most likely never be able to breathe on his own. It was now a question of when. When would we decide to let him go? We prayed and felt strongly that it was his time. It was apparent to both of us that he was no longer with us. We wrapped him is his favorite blanket that was green with a monkey, and we held him. We whispered our goodbyes, told him we loved him and within minutes he passed from this life to the next. As difficult as it was to watch our beautiful baby boy leave us, we knew it was the right decision. We didn’t want him to live that kind of life, hooked up to a ventilator for our benefit. We miss him more every day and will never forget his beautiful smile.
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We are currently working with our genetics team from Upstate University, Golisano Children Hospital to continue finding out more information about the disorder that affected Drew. We held a benefit in his honor to help cover the cost of genetic testing to pinpoint the specific mutation. We have created a blog to update the progress of the genetic tests at myrecipeforlemonade.blogspot.com.