April 4, 2012 - The text from my brother said “Guess who is pregnant!” I replied, “Guess congratulations are in order!”
We all were ecstatic with this great news. The family was ready to joyfully welcome a new family member.
Sometime in early August I had a voice mail from my brother. “Sis. Call me.” I knew from the trembling of his voice - almost tearful - that something was wrong. My suspicions were correct. While my pregnant niece was healthy, her un-born baby was exhibiting signs of serious problems.
After several tests at two hospitals, it was determined the baby has Trisomy 18 (also known as Edwards syndrome); a chromosome disorder.
As you can imagine, the whole family has since been on an emotional roller coaster -- with my niece and her husband, in their first year of marriage, being especially tested.
Trisomy 18 babies, I’ve come to realize after researching information on the Internet, typically have multiple health issues. Many are still-born and many babies only live for hours, days, or a few weeks. If a Trisomy 18 baby survives for any period of time, the baby will typically require extensive care and support for their entire life.
Recently I had the opportunity to spend some time with my niece, who is demonstrating remarkable strength and is setting a positive example for the rest of the family. I asked her what she would tell the www (whole wide world) about Trisomy 18 if she had the chance.
Immediately she said that carrying a baby to full term, all the time knowing that there will be challenges to face when the baby is born, is quite different than experiencing a miscarriage. Like all moms-to-be, she feels the kicks and is forming a bond with the tiny life growing inside her. She quickly added that she is thankful technology is such that she was told of the syndrome early enough to study options and make plans.
She stressed the importance of having a support group and mentioned several online sites with forums such as http://www.t18moms.com/, http://www.trisomy.org/, or http://www.hopefortrisomy13and18.org/. With Trisomy 18 being so rare, local support groups are not always available.
Whether her strength and resolve comes as a result of her training as a nurse or from her personal inner-core, she is truly amazing. I'm impressed that she has vowed to help others who experience pregnancies with this syndrome and am confident she will be a valuable resource to others.
I share this very personal story with our Vision and Verb community not to seek sympathy, but to increase awareness of this rare syndrome. And, I share this story as a tribute to my niece and her husband who say, “We may not have our baby with us for very long, but we will love her unconditionally for the time she is with us.”
“Every child forever changes our world.” ~ Trisomy 18 foundation