The first time I'd heard of Trisomy 13, 18, or 21 was in my high school biology class. What each genetic disorder meant, I knew, but I wouldn't learn for another 10 years what one of those disorders really meant.
Our first born, our daughter, seemed to be part of a healthy, 'normal' pregnancy. A screening was done early in the pregnancy, the first part of which turned out positive, suggesting our first baby did have a genetic disorder; however, after the second part of the screening was finished and came back negative, the doctors ruled out the chance that our baby had a genetic disorder. A wave of relief rushed over us at the news and things progressed smoothly until it was time for Hailey to come into the world.
At birth, doctors discovered Hailey had a condition called gastrochisis, where part of her intestines had grown into her umbilical cord (or rather, they never left it). This condition required surgery which required Hailey to be air lifted to a level 3 NICU. We were told that this condition can be fixed, and there was no need to worry about it. However, while in intensive care, Hailey had many examinations and tests done on her. Doctors began to notice various 'symptoms' suggesting she may have a chromosomal disorder; features like her curled hand, low set ears, small eyes and other small facial features, the skin tag on her face, etc. Hailey's surgery to correct her gastrochisis was a success; however, her major complication had to do with her breathing as she would experience apnea, periods where she'd stop breathing. She also had some initial problems with her blood, and she underwent a blood transfusion. But in terms of other typical symptoms for chromosomal disorders, Hailey didn't have any. So doctors were hopefully that she might be 'fine.'
A couple of days later, we learned the results of Hailey's genetic test. She did have a chromosomal disorder. We knew if they said Trisomy 21 that meant she had Down Syndrome and would go on to live her life. We knew if they said Trisomy 13 or 18, that our little girl was going to die, because those are the fatal trisomies. They said Trisomy 18, and our lives were forever changed in a moment.
March is Trisomy Awareness month, and March 18th is Trisomy 18 Awareness day. If you followed my blog last year, you'll remember that Trisomy 18 day is March 18th for a reason. With Trisomy 18, a baby has 3 copies of the 18th chromosome. To represent the numbers 3-18, March the 18th was chosen, 3-18.
In honor of March being Trisomy Awareness month and Trisomy 18 Awareness day, Hailey's Hope is getting ready for it's first NICU bag delivery of 2011 to the Children's Hospital at Vanderbilt for the first time. We will be delivering 30 care packages to their NICU on March 18th, in honor of Hailey, who had Trisomy 18 and is the reason for Hailey's Hope and our connection to the NICU.
Please don't forget if you'd like to support Hailey's Hope and help us continue to donate care packages to families with babies in intensive care units, there are several ways you can do that. If you'd like convenience, you can visit our webpage on the Project Sweet Peas' website and donate using our PayPal button. If you'd like to feel like you received something back for donating, you can participate in our current fundraiser, Flowers of Hope, which ends April 15th. We are also welcoming of monetary and item donations that are mailed or dropped off.
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