“Verity’s life is anything but futile! She brings love and joy to our household every single day. Her smile and laugh light up our world.”
I had never heard of Edwards Syndrome before I got the phone call, but it was the day that changed our lives. Diagnostics confirmed over the next week that our daughter Verity had full trisomy 18. I spent the latter part of the pregnancy in a fog of grief and anxiety over the unknown. I’m an experienced mom—Verity is our 9th living child. But I had never experienced anything like this journey, and truthfully, I wasn’t sure I’d be up to the task. I was already overwhelmed caring for our large family and homeschooling our children. How in the world would I attend to a fragile baby?!
Nevertheless, she was our baby, and we already loved her and were willing to fight for her to have a chance. I dug in and began to research so we could figure out how best to prepare for what lay ahead—even though the uncertainty threatened to overwhelm us. The biggest thing we learned—once we got connected to an online community of families in similar circumstances—was that this diagnosis is not, in fact, “incompatible with life.” The more we learned, the more we realized that instead of preparing for our daughter’s death, maybe…just maybe…we should instead be preparing for her to live! We read about interventions Verity might possibly need and included in our birth plan our instructions for her to be treated according to her needs, not her diagnosis.
Overall we had a supportive medical team on board with our desire to give Verity every chance. I did have a shockingly negative meeting with the head neonatologist during my pregnancy (more on that in a bit). However, our genetic counselor, my OB at the military clinic where I was originally seen, and the doctor who took over my care in the third trimester were all very positive. We received ultrasounds frequently to check growth (she hovered around the 4th percentile). Other than clubbed feet, clenched fists, and small size, she did not seem to have other issues that gave us concern.
February 28, 2017, 4:05am, Verity Irene entered the world and lay on my chest. Finally, after 40 weeks and 3 days, there she was, all beautiful and dark-haired and perfect. Time stood still as I held her tiny clenched fists, kissed her wet, black hair, and stroked her wrinkled little body. I watched my husband cut the cord and regretfully agreed after a short while that the attendants needed to take her; even love-filled eyes couldn’t deny that she was turning gray.
We spent 18 days in the NICU. By the time we were discharged, Verity’s cardiology team had given her a green light: her three VSDs, which we discovered on an echocardiogram the day she was born, were not likely to need surgery after all! We went home with an NG tube, feeding pump, suction machine, and pulse oximeter, all of which we somehow felt reasonably comfortable using on our own. (I was astonished that they allowed us to leave with such a fragile little bundle!) The truth is, you learn what you need to know when you need to know it. One step at a time, one day at a time…and yes, one excruciatingly long night at a time. (This life is not easy.)
And now that our girl is approaching her 4th birthday, I have a few things I’d love to share with that neonatologist who told me our daughter would live a “futile” life, the one who talked about my “retarded” baby and warned me she would be a “drain on the family,” mentally, emotionally, and financially. Sadly, he will probably never read this post, but I will share them anyway in hopes that our story will give encouragement to others who are on this journey!
Verity’s life is anything but futile! She brings love and joy to our household every single day. Her smile and laugh light up our world. She has quite the fan club in the community and online, people who pray for her and love to hear how she is doing. She has touched more lives without ever speaking a word than many people will in a whole lifetime, just by being her own unique little self. Of course she has developmental delays—but that makes every milestone, every accomplishment, that much sweeter.
Oh, and my fears and concerns about being a special-needs mama? Gone. I can change a G-button, work with therapists and insurance, and have some pretty stellar suctioning skills. If Verity ever needs a trach or other means of support, you can bet we’d be learning how to handle that, too!
Since hearing our diagnosis for the first time, I’ve learned a corrected statistic. We initially heard that only 5-10% of all Trisomy 18 babies reach their first birthday. But recently I read that with interventions at birth, the number climbs to 35%. It’s still a lower number than we would like, but our Trisomy community is proof that there is HOPE. And our daily life is proof that there is JOY—Verity’s five big brothers and three big sisters adore her, and my husband and I love her with an extraordinary love that cannot even be described.
Verity doesn’t know it, but she has taught many people the truth about every single person ever born:
We are loved.
We are special.
We are created in God’s image.
We are fearfully and wonderfully made.
We have a purpose.
Somehow just having Verity in our lives has only enhanced all the good that was there before she came. Somehow, because of this diagnosis, we have the opportunity to watch a story unfold that we never could have written ourselves.
Mother to Verity Irene Jacobson, Full Trisomy 18
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