March is Trisomy Awareness Month!

Beverly Jacobson and her daughter Verity

Beverly Jacobson has a daughter, Verity, with a condition called "Trisomy-18." She todl me her story a few years ago:

Trisomy 18 is not a death sentence: Verity’s story

Beverly Jacobson was pregnant with her ninth child when, on September 23, 2016 she received “the call that changed her life”. She wrote in her prayer journal:

Yesterday may well be a day I look back on as “the day that changed my life.” Time will tell…in the meantime, I wait 73 hours…wait for definite answers, resolution to the “abnormal results of your blood test.” That phone call was NOT what I expected early yesterday morning; I was waiting for a call to schedule our 20-week ultrasound. But. Instead I learned about test results that show an increased risk of our baby having Trisomy 18. Edwards syndrome. Basically a death sentence—either baby dies in utero, or shortly after birth, or, in rare cases, lives longer with severe—severe—physical and mental difficulties.

We are still looking at fairly good odds: 9/10 chance we have a perfectly healthy baby. But 1/10 is quite a jump from 1/187—my average risk based on my (oh-so-ancient) age.

"My soul finds rest in God alone—my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken." (Psalm 62:1-2, NIV)

Oh, God! Whatever we learn Monday at the ultrasound—it won’t change who you are! It won’t change my passion for you; at least it won’t make me turn away from you. I trust you fully because you are worthy of my trust. I desire to give you glory no matter what. You know my heart—it’s yours.

You also know my weaknesses and frailties. You know my fears. My anxieties and my needs. Your grace is sufficient. Hold me close, Lord. These next 3 days will seem so long. And then…what? “Each day has enough trouble of its own.” Let me be a seeker of your kingdom.

She soon learned that her baby DID have Edward Syndrome—Trisomy 18. She named her baby “Verity” and began a blog to record events and feelings.

A month after the diagnosis, she met with a geneticist and the NICU doctor on the same day. The geneticist was positive, and gave Beverly and her husband Ted some great information on LIVING with T-

18. Babies with T-18 often need heart surgery, g-tubes, and other medical intervention. But Beverly and Ted were warmed and empowered by the conversation. The NICU doctor was a different story. He referred to disabled children as “retarded” and stressed all the negative he could foresee, particularly financial and emotional stress. Beverly was “stunned into silence” by his remarks.

This doctor also used the word “futile” many times to describe caring for a T-18 child. In fact, he mentioned they could withhold any medical intervention because all of the most basic was “futile.” This insensitive doctor commented as she was leaving, “This is your last one, I hope” (!!!!) and then asked what her “religious affiliation” was. Beverly had to wait until her emotions “simmered down” before she was able to blog about this!

Fortunately, the Jacobson family has great faith and trust in God. When Beverly was feeling overwhelmed by Verity’s impending birth, and fear that her needs would overwhelm the family, she turned to God in prayer, and kept God’s word close to her heart.

During her pregnancy, Beverly reflected on the attitudes of doctors and other health care professionals, and how their attitudes can affect the fate of the unborn babies.

Parents, trusting health care professionals, receive information that may or may not be current...filtered through lenses of personal beliefs...relying on grim statistics that ignore (or are ignorant of) any positive outcomes...and under the influence of a variety within the health care field, accept sentiments that become a self-fulfilling prophecy and act accordingly…

"...the recommendations parents had from medical providers were homogeneous: comfort care at birth with the plan of not prolonging life was recommended to all parents."

Referring to other medical articles/resources, the authors of this study noted that these recommendations were probably based solely on the chromosomal diagnosis, as evidenced by many position statements, hospital policies and authors who consider that interventions for these conditions are futile. (There's that word again! "Futile." Used multiple times by the NICU doctor with whom I spoke.)

As Verity’s due date approached Beverly shared her fears and her hope:

We are less than 8 weeks away from her due date. Will we make it that long? Perhaps she will surprise us all and be one of the 33% of Trisomy 18 babies who clings to life in the womb beyond 40-42 weeks; or perhaps we will meet her well before February 25.

Verity triumphantly entered the world on February 28, 2016. She was very healthy for a T-18 baby! She needed a tube to feed but her sucking impulse was good. Maybe she could breastfeed! She had three holes in her heart (very common for T-18 babies) but as time went on she continued to thrive and grow. At her first Christmas Beverly wrote:

Y'all...we are about to celebrate Verity's first Christmas! A year ago, I was "great with child" and full of fear and uncertainty. Would we meet our little girl alive? How long would we have with her? What would her needs be, and how in the world could we take care of her along with 8 other children?

I confess that fear and uncertainty are still very much a part of our daily lives...however, joy and thankfulness are powerfully present as well. This life isn't easy, as you have glimpsed if you've followed our journey any length of time at all. But by God's grace, we are moving forward one step at a time. Our little miracle is just over 2 months away from celebrating her first birthday, a milestone we never would have imagined she would reach based on the information we received at her diagnosis. In 2017, Verity:

·                was born without complications and spent her first few minutes outside the womb breathing and crying on her mommy's chest.

·                quickly progressed from CPAP to room air to no oxygen support at all in the NICU.

·                went home after only 18 days in the NICU.

·                began her own growth curve with breast milk via NG tube.

·                had corrective measures for both of her clubbed feet, enduring castings, a surgery, and a boots-and-bar regimen.

·                had G-tube surgery at 2 months of age and continues to be nourished via G-tube.

·                moved with her military family to a new state.

·                met with a number of medical specialists, all of whom have been extremely supportive of us in our efforts to help Verity have the best possible quality of life.

·                has grown and developed in her own way and in her own time, thrilling and delighting hundreds (maybe thousands) of people around the world who have loved and prayed for her.

What a doll. What a miracle. What a GIFT. This is our Trisomy 18 Song of Triumph, and we will sing it loud for all to hear!

To GOD be the glory... God, the author of LIFE...

God, the One who gives MEANING to life...

God, the One who chose to enter the human experience by sending Jesus to dwell among us... Jesus--Immanuel--God with us--who lay down his life for us that we might have the opportunity to choose ETERNAL life.

We--Verity's family--wish you a blessed, merry Christmas. If you do not know Jesus our Savior, we pray that you will seek to know the God who created YOU, who loves YOU and gives meaning and purpose to YOUR life.

"For God so loved the world that He gave His one and only Son,

that whoever believes in Him shall not perish but have eternal life." John 3:16

Verity has continued to grow and thrive, and on February 28, 2020, Beverly wrote: She is THREE!!!

We had a wonderful birthday celebration on February 28, 2020, rejoicing in the THREE years God has given us with Verity Irene! We had an open house celebration, which...in hindsight...probably wouldn't have happened if we had known we'd be under Coronavirus quarantine-type measures shortly afterward. But praise God, all our friends and we are still healthy, and so we are grateful that we had the opportunity to celebrate with friends and family on Verity's special day! Verity wore 2 different party dresses after "anointing" one of them...so much for trying a taste of her birthday cake?! Oral eating may never be a thing for our girl, but we are so grateful she is HEALTHY and HAPPY and that we get to share life with her, because she is most definitely

Compatible with

LIFE!!!

Read more about Verity at http://verityirene.blogspot.com/.

Beverly also started an organization to help other moms of medically complex children called "Mama Bear Care."