Warren & Alyssa Russell
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Both Warren and Alyssa were born with congenital bilateral vocal cord paralysis (CBVP). It is rare to have two children in the same family born with this anomaly.
Warren, age 9, likes video games, playing with friends and fishing.
Alyssa, age 7, likes her Barbies and watching videos.
Warren was born on Dec. 7th 1988. He was 6lbs 1oz and only three weeks early. I had pre-eclampsia, but it was in its early stages and did not result in any problems for Warren. It was discovered at birth that Warren had obvious problems breathing and was trached three days later. Warren has no other medical problems and functions normally outside of the fact that he has a trach.
Alyssa was born on Feb. 26 1992. At birth we (my husband and I) new just from the way she was breathing that it had happened again. We had consulted with various geneticists for information on whether this would happen again and they assured us that it would not that Warren was a once in a million type of defect. Obviously, they were wrong so we now know that this runs in the family and we most likely will have no more children strictly out of fear. We would have loved to have another child so this is hard for us.
Alyssa and Warren are extremely lucky to only have this defect, but to explain that to a nine-year-old who wants to be like his friends to the point of lying to the Dr in hopes of getting his trach out is difficult. Is there anyone who knows of someone who can help us? Warren can breathe without his trach, but our fear is if he gets sick and his airway swells he won't be able to breathe. We haven't had much luck with our current Dr and are in the process of finding another, but any information you have would be greatly appreciated.
Update - May, 2000: Warren and Alyssa both successfully have had their trachs removed. On January 10, 2000 Alyssa had hers removed and Dr. Cuyler of Portland, Oregon was the genius behind our success. Warren had his removed on November 16th, 1998. But wasn't stitched up until Jan 10th. Both Children have done perfectly. They have adjusted to the decannulation with complete ease. I think I personally had a harder time with it than they have. After having the trachs in for over 10 years for Warren and 7 for Alyssa, I found myself sort of lost as to what to expect. Though now we have 2 wonderfully healthy children. Warren is now 11, and Alyssa turned 8 in February.
Thank you,
