(RCH) It’s hard enough to hear your unborn baby has a disability, but it’s even worse to hear that if she survives birth, she will live a “futile life.” Yet that’s exactly what a specialty doctor told me in a meeting to discuss the next steps in my pregnancy with my daughter Verity, whom he callously called “retarded” because of her Trisomy 18 diagnosis.
Instead of having our questions answered, that moment left us devastated, feeling as if we had nowhere to turn.
We did not realize then how joy-filled and inspiring Verity’s life would be. We couldn’t possibly have known how proper support could empower us to stop feeling helpless and to find our new roles as advocates, giving voice to the value of her life. Verity, who recently celebrated her eighth birthday, is thriving and is an immense blessing to our family and entire community.
Despite the early challenges, I was determined to give Verity the best possible chance at a fulfilling life. The grief of not knowing whether our baby would survive to birth - or what to expect if she did - gave way to surprise and great joy when she only spent 18 days in the NICU. Each day, week, and month after that, she grew stronger and more resilient.
I learned from other moms that with the right love and care, some children with Trisomy 18 live into their teenage years. In fact, one study reveals that when babies with Trisomy 18 received appropriate care and surgical interventions, 81.5 percent survived until hospital discharge.
My family – including Verity’s eight siblings – cannot imagine life without her. With the help of a nurse, she rides the bus to school with friends who love spending time with her and helping her on the playground. We have all become more compassionate people due to Verity’s presence in our lives, and I can honestly say that she is a blessing, not a burden.
Families receiving difficult diagnoses like Verity’s need support, compassion, and hope. Yet far too many providers tell mothers that their precious sons and daughters will inflict nothing but chaos, sadness, and financial ruin to their families, leading more than three-quarters of babies diagnosed with Trisomy 13 or 18 to be aborted.
I learned from other moms that with the right love and care, some children with Trisomy 18 live into their teenage years. In fact, one study reveals that when babies with Trisomy 18 received appropriate care and surgical interventions, 81.5 percent survived until hospital discharge.
My family – including Verity’s eight siblings – cannot imagine life without her. With the help of a nurse, she rides the bus to school with friends who love spending time with her and helping her on the playground. We have all become more compassionate people due to Verity’s presence in our lives, and I can honestly say that she is a blessing, not a burden.
Families receiving difficult diagnoses like Verity’s need support, compassion, and hope. Yet far too many providers tell mothers that their precious sons and daughters will inflict nothing but chaos, sadness, and financial ruin to their families, leading more than three-quarters of babies diagnosed with Trisomy 13 or 18 to be aborted.
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Drawing confidence from other mothers online, and encouraged to see Verity defy the odds, I began offering hope and encouragement to other moms who were expecting children with any life-limiting condition. Imagine the difference in outcomes for children whose mothers are told, “Your fetus has a condition; when do you want to terminate?” compared to “Your child has a condition that comes with challenges, but we have resources for you.”
With full support from my husband and children, I established Mama Bear Care, a non-profit dedicated to serving hundreds of mothers across the nation (and in other countries) dealing with many types of prenatal diagnoses. We celebrate the pregnancies and these precious little lives with special gifts and provide families with counseling and education about how they can prepare and care for their children.
Even mothers whose children only survive a few hours after birth say that they would go through the experience all over again with no regret, rather than purposefully terminate their children before they have a chance of survival outside the womb. These parents deeply cherish the moments they get to spend with their newborn sons and daughters and treasure the memories of their children. Research confirms that allowing pregnancies to progress naturally is much better for moms’ mental health than ending pregnancy prematurely.
Tweet This: Moms are told their children will inflict chaos, sadness & financial ruin-resulting in abortion for more than 3/4 of Trisomy 13 or 18 babies
At Mama Bear Care, we provide mothers with individualized plans for speaking with their doctors, preparing for birth, and taking care of their little ones’ unique needs – regardless of what type of diagnosis they receive. We want families to experience the blessing of spending time with their children, no matter how long they spend on this side of heaven.
Our Mama Bear Care Coordinator, who lost her daughter at six weeks of age, provides a special kind of empathy to our mothers. Two pastoral counselors whose granddaughter has Trisomy 18 help couples with marriage and grief counseling at no cost. Their knowledge and insight expand on the support women find through our ongoing Facebook community.
Long term, we hope to establish a retreat center for moms where they can go to rest, refocus, and receive inspiration and community with families in similar circumstances. Meanwhile, we empower women navigating this journey to embrace their Mama Bear role, equipping them to advocate for their special babies with fierce love and tender care.
Verity’s story is proof that life-limiting conditions are not necessarily life-preventing and that when given the chance, these uniquely gifted children can live fulfilling lives surrounded by those who love them. Sometimes, it simply takes a village.
Editor's note: Beverly Jacobson is the founder and CEO of Mama Bear Care and lives in Colorado. This article was published by Real Clear Health and is reprinted with permission. March Is National Trisomy Awareness Month
