{"id":255457,"date":"2021-10-28T10:44:13","date_gmt":"2021-10-28T15:44:13","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=255457"},"modified":"2021-10-27T17:10:55","modified_gmt":"2021-10-27T22:10:55","slug":"trisomy-18-mom-change-message","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/trisomy-18-mom-change-message\/","title":{"rendered":"Mom of daughter with Trisomy 18 fights to change the message for families like hers"},"content":{"rendered":"
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When parents learn that their preborn child has a life-limiting diagnosis like Trisomy 18, many find it to be an incredible challenge. As they struggle with the diagnosis, most hear nothing but negativity about the challenges their child will face. In far too many instances, these parents are encouraged to abort. Even well-meaning medical professionals often don’t have the knowledge to offer any positive encouragement or advice. After going through this experience herself, one Colorado mom started Verity’s Village<\/a>, an organization that aims to change the narrative.<\/p>\n

Learning Verity has Trisomy 18<\/strong><\/p>\n

Beverly and Ted Jacobson learned firsthand the fear that many parents experience when their ninth child, Verity, was prenatally diagnosed with Trisomy 18. Also called Edward’s syndrome, the condition is a rare genetic disorder that can cause many medical limitations. Many children with the condition don’t survive long past birth.<\/p>\n

In an interview with Live Action News, Beverly talked about the difficulty of receiving the diagnosis with very little support or information from medical professionals.<\/p>\n

\u201cThe information we received at the time was a little sketchy; we didn\u2019t get the full picture,” she said.\u00a0“Our genetic counselor meant well, but she didn\u2019t even know that there were support groups online. Most of the people we ran into had not dealt with a child, or baby, or pregnancy with this complication.\u201d This lack of information and support greatly influenced how the family dealt with the news.<\/p>\n

READ: Parents celebrated daughter with Trisomy 18 who lived 50 days after birth<\/a><\/em><\/strong><\/p>\n

\u201cWe as a family were devastated,” she continued. “The information that we were gleaning was that if she were to be born alive, the average lifespan would be five to 15 days. And so, we\u2019re having conversations about where are we going to bury our baby, and what\u2019s the memorial service going to be like. And I just grieved so much.”<\/p>\n

As the family grappled with the diagnosis, Beverly said it was finally connecting with others \u2014 about six weeks after receiving the Trisomy 18 diagnosis \u2014 that gave her a glimmer of hope. \u201cPersonally it was devastating, but once we got connected with a community where we saw pictures and photos of children, not just babies, but children who had this condition and were thriving in their own special way… that was the lifeline, that was the hope in the middle of the heartache. It was like, maybe we\u2019re going to have some time with her,” she said.<\/p>\n

In fact, Verity not only survived the birth, but today, she’s four years old and thriving in her own special way.<\/p>\n

\u201cLife now is amazing \u2014 and it\u2019s not perfect, and it\u2019s not easy, but it\u2019s so much better than we could have imagined,” Beverly said. “And the way she\u2019s enriched our lives is just amazing as well.\u201d<\/p>\n

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Courtesy of Beverly Jacobson<\/p><\/div>\n

The Birth of Verity’s Village<\/strong><\/p>\n

In the aftermath of Verity’s birth, Beverly wrote a book called\u00a0“From Diagnosis to Delivery”<\/a>\u00a0to share her story and help other parents in a similar situation. She also started connecting with others navigating difficult prenatal diagnoses.\u00a0She began a support group for other moms, and it quickly grew to nearly 150 members. As her support group grew and demand increased, Beverly realized how important and needed it was, and Verity’s Village was born.<\/p>\n

“Verity\u2019s Village supports families who receive a life-limiting diagnosis for their babies. The goal is to provide hope, encouragement, education, and practical support for them during their journey,” she explained.<\/p>\n

Beverly said while she doesn’t have firm statistics, approximately 80% of parents will abort a baby that receives a diagnosis of one of the more rare trisomies, like Trisomy 18. “If they have perinatal support, 80% of those parents will choose to carry to term instead,” she said. “This is so important for the moms psychologically.” Through her ministry, she hopes to provide the support that is so needed, and encourage these women to choose life.<\/p>\n

In order to get her organization off the ground, Beverly received a $10,000 grant from Save the Storks<\/a>. The group also provided her with a lot of back-end support, doing things like setting up her website, helping her design a logo, and aiding with marketing.<\/p>\n