Zach & Tatum (2014)

Disclaimer: The following was transcribed from an article in the Capper Foundation Archives. The choice of words used at the time this was written may not reflect current Capper Foundation inclusive language and views.

Zach & Tatum (2014)

by Jim Leiker, Capper Foundation President & CEO

I would like to share a miracle story of life and love about a six-year old girl named Tatum, and a five-year old boy named Zachariah, whose worlds were miles apart, but their stories would soon connect.

A little over six years ago Brenda and Jack Spurlock were expecting to add their seventh child to an already large and loving family. About four months into the pregnancy, the Spurlock’s were faced with some devastating news: their little girl Tatum more than likely wouldn’t make it full-term and was given a 0% chance of life outside the womb. Tatum was diagnosed with Partial Trisomy 18, which is a condition that is caused by an error in a cell division, known as meiotic disjunction. She was also diagnosed with several serious health issues involving her heart, kidneys and multiple brain disorders. The most severe was a large bubble of fluid at the base of her skull, called an enecephalocele.

Tatum’s parents were faced with some gut-wrenching decisions. They were asked to do the unthinkable and develop a Do Not Resuscitate plan for their unborn child. “Would we extend her life? Would we put her on life support?” Brenda and her family knew they had to prepare themselves for the worst and contacted the Alexandra House in Kansas City, a perinatal hospice and infant care system for parents or pregnancies that end unexpectedly at any point, from any cause. Alexandra House’s foundation is rooted in faith in God, which brought comfort to the Spurlock’s, who live their lives based upon a deep faith. While the family was preparing themselves to say goodbye to their unborn child and sister, they were praying for a miracle, and on February 10, 2008, Tatum was born. In three days, she had three brain surgeries. The doctors, however, weren’t holding out hope due to the complications with her brain and the Trisomy 18. Brenda said, “They were telling us to prepare for things to go south quickly. Her neurosurgeon gave us the stock answer that so many parents receive, ‘just take her home and love her.’” But, something was happening and Tatum was beating the odds.

Fast forward almost a year, another young mother, also receiving support from the Alexandra House was given similar news about her pregnancy, and her unborn son Zachariah. He was to be adopted but when they heard of his diagnoses, they withdrew. Patty, director of Alexandra House, contacted Brenda to reach out to this young woman. She knew Brenda was strong in her faith and could offer some comfort and support. “When Patty contacted me, she really just wanted me to pray for the mom and I don’t know why, but it just came out of my mouth, I said we’ll take him, we’ll take him.” Brenda talked to her husband and they decided, if he survived the birth, they would adopt him. They prayed daily for him as a family and in their church. Brenda continued to mentor his birth mother. Zachariah was born in May of 2009 with an encephalocele and a large open skull defect.

Brenda continued contact with the new mom, providing any support she could. A few weeks after his birth, she received a phone call, it was Zachariah’s mom. “She said I can’t do it, I can’t keep him, he’s going to be blind! Disabled! Do you want him?”

Brenda immediately agreed. “I said yes and left a note for my husband, saying I’m going to pick up our baby!” The Spurlocks knew they received another gift from God, but nothing could prepare them for the condition of their new baby. Brenda said, “When we met him that first day, I walked in and my heart stopped! His little head was so misshapen, he was pasty and frail. It was shocking, like seeing an orphan in a third world country. I looked at him again, and I was instantly in love — as if I had just given birth to him!”

Over the next few years both Zachariah and Tatum would undergo multiple hospitalizations and surgeries. In July of 2013, the Spurlocks sought the help of Capper Foundation. Zachariah has the diagnoses of enecephalocele, cerebral palsy, autism, low vision, partial paralysis and additional brain anomalies.

When Zachariah first arrived at Capper, he was primarily nonverbal, with very limited vocalizations. He didn’t like to be touched by anyone, he used a wheelchair for mobility, and could only communicate his needs by fussing. The Spurlocks hopes were for their son to be able to communicate his wants and needs, gain mobility and learn to eat before a feeding tube became a necessity.

In the last six months, the Spurlock’s have seen Zach make amazing progress. He recently has taken two steps while at therapy, and five steps while at home. He is learning to scoot himself out of his wheelchair and now uses his left hand to help get back in. He has over fifty words (guttural sounds), including nicknames for all his family members, and is starting to combine a few sounds. His mom recalls, “Just the other day, we were walking down the hall and Zach kept saying “Love you Cris” to his Capper physical therapist.” Most recently, he began tolerating a couple types of blended foods, after 5 1/2 years of being strictly bottle fed, due to dysphagia and sensory issues.

Tatum has also made great strides since first receiving therapy at Capper Foundation. She no longer uses a wheelchair or walker, she now walks unassisted. Jenny, her speech therapist, noted that “She did not have a lot of words when she first started. So we began with sign language, but her vocabulary has really blossomed over the last year, and Tatum no longer signs.”

Both Tatum and Zachariah have made remarkable improvements since starting therapy here. They will continue to receive the therapy they need because of your wonderful support of Capper Foundation.