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Beyond spina bifida, Samuel & Zachary are answers to prayer

ATLANTA (BP)–Alex and Julie Armas are the kind of people that the Apostle Paul would call “steadfast and unmovable.”

They’ve had some formidable challenges hurled at them, but in spite of the heartache and pain, they have taken the challenges with faith and grace.

In an October 2003 article in Georgia Baptists’ Christian Index newsjournal, the Armases were hailed for their decision to proceed with a pregnancy when the child Julie was carrying had been diagnosed with spina bifida. The doctors indicated that fetal surgery did not seem to be a viable option and that such surgery would cost hundreds of thousands of dollars. Julie remembers that they stopped just short of suggesting abortion.

Nevertheless, Julie and little Samuel underwent in utero surgery at Vanderbilt University Hospital on Aug. 19, 1999. She was 21 weeks pregnant. Samuel weighed less than one pound.

Freelance photographer Michael Clancy was in the operating room to take pictures for USA Today and took the photo of Samuel’s hand as he grasped the finger of the surgeon. After taking that much-publicized photo, Clancy, who had been a pro-choice advocate, has become a champion of pro-life causes.

Samuel was born by C-section 15 weeks after the surgery and although he has had multiple surgeries since, he has avoided many of the more serious problems of spina bifida. Billy Godwin, pastor of the Armasas’ Atlanta-area home church, Ephesus Baptist in Villa Rica, reports, “Samuel is bright, extremely active and very gregarious.”

During the U.S. Senate debate on partial-birth abortion, Alex and Julie were invited to Washington to testify before Kansas Sen. Sam Brownback’s subcommittee, and after the bill passed, President Bush invited them to attend the actual signing ceremony at the White House.

In November 2003, the Armases were blessed with a second son, Ethan, who is as healthy and happy as a child can be. Then in late 2004, the Armases learned they were expecting a third child. It was somewhat of a surprise, but they were excited about the prospect of welcoming another child into their family.

Julie had an ultrasound in February 2005 which seemed to indicate that this child also had spina bifida. An emergency visit to Vanderbilt to see the doctor who performed Samuel’s surgery confirmed the diagnosis. The news was devastating, but once again Alex and Julie began to draw from the peace and strength of the Lord as they faced the reality of having another spina bifida child.

The couple decided on Zachary as the name for their third child. The physicians determined that Zachary’s lesion level was at L4, the 4th lumbar vertebrae, which was very similar to the lesion level at the time of Samuel’s in utero surgery five years earlier.

Since Alex and Julie had experienced positive results with Samuel’s pre-natal surgery, they hoped the same kind of surgery would be available to Zachary but discovered that the National Institutes of Health is conducting a clinical trial (MOMS: Management of Myelomeningocele Study) on fetal surgery, which has placed the NIH in control of all fetal surgeries; none can be performed outside of the study.

“To ensure a fair and unbiased population and process is used, the study randomizes eligible candidates into either an experimental group (pre-natal) or a control group (post-natal),” Alex recounted. “For the pre-natal random selection, fetal surgery is performed at one of three designated hospitals. For the post-natal random selections, surgery is performed immediately after birth by the same doctors and at the same hospital.”

Initially, the NIH denied the Armases entry into the study due to the prior fetal surgery. “We felt the choice was taken away from us and we fought to have the chance for the same surgery that Samuel had prior to the clinical trial,” Alex said. “After six weeks of letters and phone calls to multiple congressmen and senators in Washington, the NIH reviewed our case and decided on medical grounds to allow us entry into the study.”

But after entering the study, the Armases were randomized to the post-natal group, which means we could not have fetal surgery. “Instead, we traveled back to Vanderbilt University Medical Center in July 2005 to have the same team deliver Zachary and perform the necessary surgeries soon after.

“Since we are enrolled in the study,” Alex observed, “Zachary will be followed closely by the Vanderbilt team for a couple of years. Once the study is completed, the findings will be published in medical journals for objective review and consideration of the risks versus the benefits.”

“This will likely determine the future of fetal surgery for spina bifida.”

Zachary had surgery to close his back 24 hours after he was born. He had subsequent surgery to insert a shunt eight days after birth. One week after returning from Vanderbilt, Zachary showed signs of hydrocephalus and had to undergo a shunt revision at Children’s Healthcare of Atlanta at Scottish Rite. His health condition has been uneventful since that time.

The future of Zachary’s health is unknown, but comparative lesion levels and early upper leg function would indicate that he should be able to walk short distances with leg bracing. The added use of crutches, walkers or intermittent wheelchair use is unknown, but likely.

While some parents may choose to abort a spina bifida child, abortion was never an option for the Armases.

“Our convictions are grounded in beliefs established through our upbringing and through what the Bible clearly says is wrong or right,” Alex said. “Abortion is wrong. Life in the womb is God-created, even with birth defects. God doesn’t make mistakes, whether creating a child with spina bifida, Down syndrome or even more severe issues. It is still a life that has just as much a right to live as any ‘normal’ unborn child.

“Children are a true blessing from the Lord,” Alex added, “and have been an answer to prayer for us.”

The Armases believe that what was said about the blind man in John 9 is true of their situation -– that Samuel and Zachary were given to them that “the works of God should be manifest in [them].”
J. Gerald Harris is editor of The Christian Index, newsjournal of the Georgia Baptist Convention.

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  • J. Gerald Harris