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Laura Gonzalez was in the second trimester of her pregnancy when an ultrasound revealed her child had Trisomy 18, a rare genetic disorder. There was a high probability her baby girl, named Amanda, would not make it to term. If she did, there was an even greater chance she would not live beyond a few days.
Laura and her husband Ron chose to continue the pregnancy knowing they would need experienced guidance in caring for her, and in coming to terms with their overwhelming emotions. Should they have a baby shower, or decorate a nursery? What do you tell family and friends? And how do you help Amanda’s sister, two-year-old Sara, to cope?
They were referred by their doctor to the Gilchrist Kids perinatal palliative care program of Gilchrist Hospice (Maryland). Beginning while Laura was still pregnant, she and her husband began receiving expert counseling in what’s called “anticipatory grief,” or learning to make peace with an impending loss.
“I lost a lot of tension off my shoulders when I knew that there will be a team of people that are going to walk through this with us, always available,” said Laura.
Team members were present for Amanda’s birth on October 11, 2013. Months later, they remain involved, helping the family document her legacy in keepsakes from photo albums to handmade ornaments. The Gilchrist team also includes a Child Life Specialist, specially trained in helping siblings like Sara to not feel left out.
With this support, the family is finding the strength to cope with the reality that 99% of children with Trisomy 18 do not see their first birthday.
“Hospice really helped me to think about how each day can be a miracle,” said Laura. “We know with Amanda, just like with anyone else, we might not see the next moment. So let’s be in this one.”
To learn more about Gilchrist Hospice, click here.
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