Update 11: December 31, 2006

Update on Zane's Progress

We want to express our sincere appreciation for all of the prayers, phone calls, emails, and other forms of encouragement that we’ve received over the past few days. It’s amazing that people who don’t even know us have been praying for little Zane.

Zane is currently breathing on his own. His tube feedings are going well, and the doctor is steadily increasing the volumes of his feedings.

We learned a few days ago that Zane was born with Trisomy 18 (Edwards syndrome). This is a chromosomal abnormality caused by an extra number 18 chromosome. In Zane’s case, he has full Trisomy 18, which means he has a complete extra chromosome in all of his cells. He has a number of the obvious external defects characterized by the syndrome, but his major organ systems appear to have escaped malformation. Based on what research you look at, Trisomy 18 occurs in anywhere from 1 in 3000 to 1 in 6000 live births. In the realm of autosomal trisomies, Trisomy 18 is second only to Trisomy 21 (Down syndrome).

What is most distressing is the high mortality rate. It varies somewhat depending on what you read, but in all cases it is very upsetting. About half die in utero. Of those brought to term, as many as half will die in the first week. There is a 40% chance of surviving to age 1 month, and only a 5% chance of surviving to age 1 year. There is a 1% chance of surviving to age 10 years. Of those who survive, there is always profound mental retardation and physical handicaps.

As you can imagine, the past few days have been devastating for us. But at the same time, we look forward to our daily visits with Zane in the ICU. It brings us a great sense of peace when we sit and hold him, and it helps calm us enough to start talking about what the next step will be. Because no one can predict Zane’s life expectancy, we can’t plan for the future. We are, however, starting discussions with the doctor for bringing Zane home in the next couple of weeks. It will be less stressful for us if we have him at home, and we feel that it will be better for our family if we can have all of us together to share whatever time we have.

Please continue to pray for Zane and our family.

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