Losing an infant to a rare disease, parents want to help others
9:46 p.m. Thursday, July 12, 2007
Don and Anissa Engel lost their daughter Reese in March to Trisomy 13. She lived for barely and hour after her birth. Now, the Engels say they're finding strength in researching and sharing their experiences with the rare condition, hoping their story may help others facing the same struggle.
It was a routine check up early in Anissa Engel's pregnancy. She and her husband Don were expecting their third child.
But after giving birth to two healthy girls, Anissa says something was just different.
"I didn't feel her moving as much. They had trouble finding the heart beat," Anissa Engel said.
For more information
Information is available from Living with Trisomy 13, Caring Bridge and A Butterfly's Touch.
Doctors diagnosed the baby with Trisomy 13.
"A lot of times the Trisomy 13 is a death mark," Don Engel said.
The condition means each cell has a third copy of chromosome 13, leading to defects in the heart and brain and abnormalities like a cleft palate.
Most pregnancies don't go to term. If they do, 85 percent of babies die within a month.
"You think you can prepare yourself with this," Don said.
Reese survived and was born March 14th.
"We like to say she beat the odds twice," Don said.
She lived one hour and nine minutes.
"She passed away in my arms, and she never knew sadness," Don said.
The Engels now find comfort planning out Web sites and pamphlets to make others aware of the condition.
"We've found a really large ring of support for this type of condition," Don said.
And while they say researching and reading up can help, the best piece of advice they can give to families facing the same struggle...
"Smile."
While a majority of children with Trisomy 13 die within a month of being born, some do survive. There are more than 66 survivors.
Comments
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Jul. 13, 2007 at 8:37 a.m. (Suggest removal)wendy (anonymous)
Such a terrible tragedy,I admire their attitude and my prayers are with them
Jul. 13, 2007 at 3:42 p.m. (Suggest removal)parkay (anonymous)
Abortionist quack George Tiller would have liked to make a big profit off killing this baby, but his incinerator and bank account will come up short in this case. The Engels will be justified in granting their daughter the opportunity to live every minute of her short life. None of us are created perfect, but all are just right for God's purposes, if we will look.
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