Children in Jeopardy: Zechariah’s Story

By Ashley Antle

Samuel and Kathy Grace Sudolcan’s home is filled with love, joy and hope. You see it in the smiles of their three sons, including 2-year-old Zechariah, despite the fact that every breath he takes is dependent on a well-equipped and working ventilator.

Samuel calls Zechariah’s vent “the old workhorse.” Though it's an older model, it never misses a breath. Over the years, the couple has mastered the art of operating, cleaning, and changing its fittings, and they wince at the thought of trading it in for a newer model. After all, why fix what isn't broken?

Change is hard, even in the best of circumstances. Change while caring for a child with complex medical needs, especially when unnecessary, is like adding a mountain to an already steep climb. It’s challenge on top of challenge. Stress on top of stress.

But that’s what thousands of families served by Cook Children’s Health Plan (CCHP) are facing due to a recent decision by Texas’ Health and Human Services Commission (HHSC). Despite having a 20-year record of excellence serving children and families in Tarrant County and surrounding areas, HHSC denied the renewal of Cook Children’s Health Plan’s contract for managing Texas’ STAR Medicaid and CHIP programs in its service area, starting in Sept. 2025.

Instead, the commission plans to award contracts to four national, for-profit insurance companies. The decision, made through an unfair and flawed re-contracting process, places more than 125,000 low-income families and children at risk of losing vital services and interrupting long-established relationships with their physicians. It ignores the human cost of removing access to well-performing, non-profit community resources such as Cook Children’s Health Plan and its trusted network of medical providers, and forces families to rely on out-of-state, for-profit providers.

Zechariah is one of the more than 8,000 medically fragile children covered under Texas’ STAR Kids program by Cook Children’s Health Plan. While his health care coverage is not yet impacted by HHSC’s decision, his story illustrates the important role Cook Children’s Health Plan plays in the lives of its members and their families. More importantly, if CCHP loses the STAR Medicaid and CHIP contracts, the future of the STAR Kids program at CCHP could become uncertain.

“This decision won’t hurt Cook Children’s as much as it will hurt our members we serve, many like Zechariah and his family,” said Karen Love, president of Cook Children’s Health Plan. “The families and children covered by Cook Children’s Health Plan deserve the ability to choose us. That’s why we have decided to file litigation in court to stop the state from ending our Medicaid STAR and CHIP managed care programs.”

The Steep Climb

The Sudolcans learned of Zechariah’s potential medical complications in the fourth month of Kathy Grace’s pregnancy. Her 20-week anatomy scan showed malformations of his heart and issues with his kidneys. Physical markers similar to what is seen in Down Syndrome were also present, leading doctors to believe Zechariah likely had some type of chromosomal abnormality. More invasive diagnostic testing would have put the pregnancy at risk without providing much treatment benefit, so Samuel and Kathy Grace could only wait, hope and pray for the best.

As the months ticked, by doctors outlined three likely scenarios the Sudolcans could face with Zechariah. There was a very real possibility he would not make it to birth. If he did, because his heart was small and weak, he may only survive a matter of hours after birth. Or, he could be stable enough to undergo surgery to repair his most critical cardiac malformations. 

“Because of how severe his heart and lung issues were, we made the decision to hold him for a bit after birth to spend time with him before he passes, instead of going immediately into the operating room where they were willing to do surgery but didn’t have extremely high confidence in his ability to survive,” Samuel said. “They gave us the option, which was hard but incredible that they trusted us with that decision.”

Ever the fighter, Zechariah not only made it to birth, but proved himself stronger outside the womb than in. Although weighing only 3 pounds, his vitals just after delivery were stable enough for him to be intubated and transferred to the Neonatal Intensive Care Unit (NICU) at Cook Children’s Medical Center – Fort Worth where doctors monitored his condition while mapping a treatment plan.

Zechariah spent five months in the NICU, followed by two months in the Transitional Care Unit (TCU). In that time, he underwent heart surgery and a number of procedures. Genetic testing revealed he has dystal 1q trisomy, a rare anomaly involving a duplication in chromosome 1.

“There are only 40 to 50 recorded medical cases of it. Even then, none of the others have his exact duplication,” Samuel said.

The list of complications from Zechariah’s anomaly is long and impacts nearly every system in his body. Today, about 35 medical professionals are involved in his care, including a mix of physician specialists, in-home therapists and a home health nurse.

In addition to his ventilator, the Sudolcan home is filled with medical supplies, equipment and accessories necessary for his care. Much of it is stored in a number of bins that line a wall in Zechariah’s room. Excess resources are kept in the family’s pantry.

If not for the help and support of Cook Children’s Health Plan, managing it all would be overwhelmingly complex and costly.

A Safety Net At Risk

While still in the NICU, a social worker introduced Zechariah’s parents to the Cook Children’s Health Plan. The health plan provides a robust support system for the Sudolcans, allowing Zechariah to be cared for at home, surrounded by those he loves, including his 4-year-old brother Malachi and 10-month-old brother Shepherd. From medical equipment to in-home physical, occupational and speech therapy to weekly visits by Zechariah’s beloved nurse, it’s all covered financially through various Cook Children’s Health Plan benefits and coordinated by a case manager.

The family communicates regularly with their service manager, Cheryl. She champions every need of Zechariah and his family, from scheduling appointments to ordering equipment. Cheryl helped the Suldocans get a specialized stroller that adapts to Zechariah’s growth and even suggested accessories that would help keep him comfortable in the Texas heat. As a fellow North Texan, Cheryl understands how harsh the weather can be. Additionally, her engagement with other families in the community who face similar challenges as the Sudolcans offers her valuable insights into local resources, which she’s quick to share with Samuel and Kathy Grace. 

From time to time, Cheryl even checks in on Kathy Grace to see how she is holding up under the stress of caring for a special needs child.

From personnel to equipment, together these benefits are a life-sustaining safety net for Zechariah and an invaluable support system for his family.

“I don’t know how to teach him to meet his milestones, because his development is so different from my oldest son,” Kathy Grace said. “So having these therapists come in has really helped me learn how I can best love and take care of him. On top of that, his nurse that comes in four times a week has taught me different medical things so I can help him to grow and stay comfortable. Because of them, I’m more confident as his mom.”

But all of it is at risk.

Why Fix What Isn’t Broken?

For Samuel and Kathy Grace, switching benefit providers could disrupt Zechariah's care, force a change to essential equipment like his ventilator, and consume hours on new authorization paperwork and phone calls to schedule appointments with new providers.

Zechariah could have to say goodbye to the Cook Children’s doctors who have cared for him since before his birth and the therapists and nurses he’s come to know and trust, losing a valuable well of knowledge of his background and progress.

It would be a tremendous upset to their whole lives, Samuel says, and now more than ever before.

An Unexpected Turn

Since first sharing Zechariah’s story at a press conference in June, his journey has taken an unexpected turn. A severe seizure just weeks after that appearance marked a significant change in Zechariah’s health.

While this has undoubtedly been a heartbreaking experience for the family and all who know them, the Sudolcan’s unwavering faith and resilience continue to inspire us. Their days are now filled with a delicate balance of hope and care. Monday visits from Zechariah’s grandparents bring cherished moments of laughter and love, a vital lifeline amidst the challenges.

As Zechariah’s needs have evolved, palliative care has become an integral part of his treatment plan. His parents and caregivers are dedicated to ensuring his comfort and happiness every step of the way.

Through it all, Samuel and Kathy Grace remain hopeful that HHSC will do what is right for the children of Texas and allow them the stability of remaining with Cook Children’s Health Plan and the benefits, equipment and providers they depend on. Cook Children’s is committed to providing uninterrupted Health Plan services as the family navigates this new chapter, offering unwavering support during this difficult time.

“Our families are worth fighting for, and we are going to continue to fight until the state does the right thing,” Love said. “The stakes are too high and the consequences are too great to let this flawed decision stand. And we are determined to ensure that it does not.”