Parents were told their daughter was “incompatible with life”; today she is thriving

When Georgia Minor was three weeks old, her parents were told she had Trisomy 18.  Georgia’s mother, Kimberly, told the Newnan Times-Herald she was given no information about the syndrome or any reason to hope.  When she asked what Trisomy 18 was, she was simply told over the phone by a receptionist at her daughter’s pediatrician’s office to “Google it.”

Like countless other parents following a challenging diagnosis for a child, Minor did a search on the internet and found terrifying results.  What she found was that Georgia was considered “incompatible with Life” and the chance of her passing away before age one was 90 percent. Despite this bleak outlook, Minor chose to fight for her daughter’s life.  At every step of the way, Minor and her husband have advocated for their daughter and fought to get her the care she deserves.

The road has not been easy, but Georgia is now two and thriving.  One of Minor’s great passions is to ensure that when other parents Google Trisomy 18 they don’t just see stark statistics but instead real and inspiring stories like Georgia’s.  The Minors did a previous interview with the Newnan Times-Herald when Georgia was a few months old.  For some time following publication that interview came up as one of the top Google results for Trisomy 18 searches.  Minor says that is precisely the goal.

She told the Times-Herald, “That’s one of the reasons why we fight to make sure we get Georgia’s story out there.  If I had Googled it and I had seen a kid like Georgia, I would have probably had a hell of a lot more hope than I did in the beginning.”  Minor added, “That is what should pop up versus scary stories.”

Unlike the Minors, who only discovered that Georgia has Trisomy 18 after birth, many parents receive a prenatal diagnosis and are pressured to end their child’s life in an abortion.  One mother described the experience of being pushed to opt for abortion, saying, “There was also pressure because they’re telling me all the stuff I’m going to deal with if I kept this baby.  But not once when I talked to a genetic counselor did I hear there’s people who keep their babies…and before they die they enjoy their babies as much as they can.”  

For babies who born with potentially life-limiting conditions, there are life-affirming options that parents often do not hear about.  One Texas family is working to raise awareness about perinatal hospice options and connect families of critically ill children with resources to choose Life and spend precious moments with their children instead of worrying about logistics.

Even more seldom heard than life-affirming options like perinatal hospice are the stories of babies with life-limiting conditions who live far beyond their predicted lifespan.  Comments on the news story about Georgia demonstrate that other families have similar stories. One mother wrote, “I had a little boy Samuel he lived for 10 months with full trisomy 18.  I was told he wouldn’t survive to birth or would pass shortly afterwards. I fought every step of the way for him it was very hard as I was a single mum. He was a beautiful little boy I miss him so very very much I lost him in November 2007.”  

Another mother commented, “My daughter Liana Grace lived 19 months. After waiting two weeks for her to die I realized how we were going to live each day to the fully and she got stronger and I fed her a bottle and eventually food.”  She added that Liana Grace’s treatment was worthwhile because “her life mattered.”

Despite all of Georgia’s success, which the family documents on Facebook and Instagram under the name “Fierce Georgia on My Mind,” Minor says the first year was extremely difficult.  Minor had not yet connected with other families with children living with Trisomy 18 and had to advocate for Georgia with very little support.  At one point when she requested therapy to help Georgia learn to swallow, Minor says “a therapist from the state told me I was killing my daughter slowly.”  

Minor decided to pursue different therapy that has been very successful for Georgia.  She is now eating some solid foods, crawling, cruising on furniture, and saying words.  Minor says for children with Trisomy 18, “We lose the opportunity to see what they’re going to be because efforts aren’t exhausted, parents aren’t given hope or the opportunity to see.”

In an effort to encourage other families of children with Trisomy 18, Minor has started collecting stories on her blog of children with Trisomy 18, especially those who lived through the first year of life.  Minor told the Times-Herald, “I wanted that resource, if a mom does have that diagnosis – here are 25 kids who made it through their first year.”

Many children, like Georgia, are said to be “incompatible with Life,” and yet they are very much alive.  Georgia is known and loved by family, friends and therapists for her “sass,” and there is no doubt that she is a livewire.  No matter the prenatal diagnosis or genetic condition discovered at birth, every child has the Right to Life and our laws should reflect that.

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