Disclaimer: The opinions expressed in this guest post are solely those of the guest author. Standard, minor edits have been made.
We had a good life homeschooling four children on a 100-year-old hobby farm in southwest Idaho when we decided that a couple of babies would be just the ticket to reinforce the Biblical principle of being less self-centered and more mindful of others. So we conceived two more times and had midwife-assisted home births without ANY prenatal testing.
By all measures, the second of those pregnancies progressed just like the previous one, except that it was my easiest pregnancy of all. At 39.5 weeks, my water broke but labor did not progress. After nearly 36 hours, Tabitha Grace finally presented breech and her heart rate started to dip. In compliance with state regulations, EMS was notified and they arrived just in time to witness the successful breech delivery of our smallest baby.
At 4 pounds 2.3 ounces, Tabitha was much smaller than anticipated, so we opted to accept an ambulance ride to the hospital for evaluation. Upon arriving at the ER, we were bullied (with the threat of CPS) into a NICU admission for Tabitha. Once in NICU, she was given full stabilizing care of nutrition (breast milk through NG tube), hydration (IV), oxygen (nasal cannula), and warmth (heat lamp). Then, the neonatologists proceeded to thoroughly check her from head to toe for physical anomalies and organ defects.
Tabitha – 1 week old (Photo courtesy of Sandi Enzminger)
A ‘fatal’ diagnosis
After what seemed like an eternity, a neonatologist informed us that there were no anomalies or defects to report, other than a heart murmur which suggested a possible heart defect (later identified by a cardiologist to be a VSD, ASD, and open PDA). However, due to certain physical characteristics (or soft markers), they were confident that Tabitha had Trisomy 18, which we were misinformed was fatal within a week to a month, due to SIDS (or her brain simply forgetting to breathe).
At this point, the very same people who did not trust us to take our sixth baby home were then telling us that it would be completely acceptable to take her home on Comfort Care and let her pass in her sleep… without so much as a blood test to confirm their suspicions!
Although we felt like we had been kicked in the gut, we knew that God had blessed us with a unique opportunity to live out our pro-life convictions. Thus, we informed them of our intent to give Tabitha every opportunity to reach HER full potential.
So, we requested a blood test (which later confirmed Full Trisomy 18), then spent the next 24 hours learning all we could and preparing Tabitha for discharge. In the meantime, NICU set up appointments with home health therapies, medical supplies, and specialists (in many cases bypassing wait lists). With each new medical encounter, we were reminded that Comfort Care was an acceptable option, and encouraged to consider at what point to implement a Do Not Resuscitate (DNR) Order.
The constant pressure to NOT pursue interventions was astounding, and it was a struggle to obtain equipment, supplies, and services that were truly functional and beneficial. So, we determined to explore ALL options, in search of neuro-enhancing life-affirming care.
Tabitha at 16 months, persuading lawmakers to vote for Simon’s Law (Photo courtesy of Sandi Enzminger)
As we wrestled with overwhelming feelings of frustration, guilt, and fear, we retreated into isolation in an effort to keep from losing Tabitha (which we very nearly did on three separate occasions that first year). Then, when she was four months old, we made the gut-wrenching decision to fly 1,200 miles away so she could have invasive heart repair surgery, because it had become painfully obvious that the alternative was to watch Tabitha slowly suffer to death by respiratory failure.
A tenfold answer to prayer
When Tabitha turned one, we threw the biggest one-year-old birthday party imaginable, praising God for enabling her to defy statistics. And, for the first time since her birth, we realized that there IS a difference between staying alive and living, so we gradually re-engaged with society.
Tabitha and her siblings in 2023 (Photo courtesy of Sandi Enzminger)
Two months later, the entire family contracted two concurrent respiratory viruses and Tabitha was hospitalized for oxygen support. Thus, I was forced to advocate for Tabitha to receive a standard protocol chest x-ray ruling out pneumonia, as well as insist on standard oxygen supplies to maintain care at home. Once we finally got our in-home ICU fully equipped and we had all recovered from our viruses, the world shut down due to COVID-19 — and all of Tabitha’s appointments were deemed “non-essential.” This freed up our time and energy to work with a functional health physician, a nutritionist, a naturopath, and a chiropractor, which ultimately led to her increased alertness and physical activity.
Since then, Tabitha has been healthy and thriving, except for ongoing issues with constipation and reflux.
Tabitha’s life is really quite similar to her siblings’ in that she consumes three balanced meals of whole-food per day (through her G-tube); accompanies her family on all outings (even if that necessitates wheelchair accessibility); and is given every opportunity to learn and develop skills at her own pace.
Although Tabitha remains baby-like in her motor and speech development, her comprehension, personality, problem-solving ability, persistence, and micro developments clearly shine through.
At six YEARS old, Tabitha IS a tenfold answer to prayer, because she is not only teaching her siblings to be more mindful of others, but she is also empowering them to be bold and compassionate defenders of the outcast. In fact, 2020 saw all six children accompany me to Idaho’s Capitol to testify in favor of preserving parental rights in DNRs with Simon’s Law, whose passage was credited to Tabitha’s continual presence.
Tabitha at age 6 and thriving (Photo courtesy of Sandi Enzminger)
Finally, we do not cultivate a superior breed of people by exterminating those with neurological disabilities, but by caring for those who cannot care for themselves. While it may not seem like Tabitha has any societal contributions to make, she is teaching her siblings to be patient, tolerant, caring, and compassionate citizens, who view differently-abled individuals as blessings.
Our eldest daughter summed this up in her 2020 high school graduation speech, by urging her fellow graduates to “make the most of today, for tomorrow is never promised,” because all life is ultimately terminal!
Bio: Sandi Enzminger, Director of Operations for Simon’s Kids, empowering parents to advocate for fair and equal access to life-saving medical treatment. Sandi lives in SW Idaho with her husband and six children, the youngest of whom is six years old and thriving with Trisomy 18. Reach Sandi at Sandi@SimonsLaw.org.
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