Simmy's Journey: Moulton family thankful after 14-month-old's skull reconstruction surgery

This year, the Lawrence County family has a lot of thanks to give.

“We have been so blessed. Even through all the trials, we have seen God’s hand at work. He has been with us and guiding us on this journey every step of the way,” said Kelly Frank, holding her 14-month-old son Simeon, or Simmy, as his family lovingly calls him.

The zigzag pattern of stitches stretching across the top of Simeon’s skull are still visible beneath his fine light brown hair — a reminder of the four-hour skull reconstruction surgery he underwent last month to fix a rare condition called complex craniosynostosis.

“We had no idea what this was before he was born. Never had heard of it and never even knew it could exist. Now we hope to raise awareness about it and help other families who have to go through this,” Simeon’s father Jacob Frank said.

Simeon's diagnosis represents one of the major challenges Jacob, the artistic director for Decatur Youth Symphony, and Kelly, a stay-at-home mom, have faced since the two — who met while going to the same home-school group — married 14 years ago.

The family’s journey with the rare condition began Sept. 1, 2021, when Kelly went into labor.

Like her seven other pregnancies, Kelly planned to deliver Simeon at home. After six hours of intense labor, the Franks realized they needed to go to the hospital. A surgical team waited for their arrival. Within minutes, Kelly was in an operating room undergoing an emergency C-section.

"The doctor said the surgery saved both of our lives," Kelly said.

At 7:29 p.m. on Sept. 2, Simeon Frank, weighing 7 pounds, 3 ounces and 18.5 inches long, was born.

Jacob and Kelly would later learn that three of the four sutures in Simeon’s skull were fused, preventing him from being born naturally.

"Simmy's head was really bruised and big from his birth. The doctors told us they thought something was wrong because they did not feel a soft spot," Kelly said.

At 3 weeks old, Simeon underwent a CT scan at Children's Hospital in Birmingham. The medical team found one fused suture on Simeon’s skull and told the Franks that he would require surgery.

When a friend of the Franks in Huntsville heard the diagnosis, she contacted Kelly.

"She had just had a baby that had one suture fused and went to a specialist in Dallas. She told us we really needed to go to him. He had 30 years of experience doing these surgeries. I know her telling us about the doctor was God at work," Kelly said.

In October 2021, Jacob and Kelly took Simeon to meet Dr. Jeffrey Fearon in Dallas. There, the Franks found out three, not one, of Simeon’s sutures were fused. The doctor called it the Mercedes-Benz pattern, because the fused sutures which run alongside the top and sides of the skull resemble the car's logo.

"It is very rare. The doctor had only done four surgeries like Simeon's in the over 3,000 surgeries he had done," Kelly said.

According to statistics, 1 in 2,000 babies have craniosynostosis. Of those, only 1% have the Mercedes-Benz pattern.

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Comforted by Bible verse

While nothing during pregnancy alerted Kelly to the problems that lay ahead, she kept returning to the Bible verse Isaiah 12:2. "I will trust and not be afraid for the Lord Jehovah is my strength and song and has become my salvation."

It is a verse she held onto these past 14 months.

"During my pregnancy with Simmy I had some fears. There was no reason for them, but I kept having these random fears. I felt that was God preparing me for what was coming. Through this whole journey, the verse in Isaiah is one that has comforted me and given me strength," Kelly said.

After leaving Dallas, the Franks prepared for Simeon’s surgery scheduled in October 2022.

Faced with $65,000 in hospital expenses, the family began fundraising. Kelly made baked goods, Jacob barbecued pork, Liberty Community Church in Danville held a benefit singing and the family sold T-shirts and wrist bands.

A friend of the family who worked with James Spann sent a T-shirt with information about Simeon to the well-known Birmingham meteorologist.

On Sept.1, Spann posted a photograph of himself wearing a Simmy’s Journey shirt.

“North Alabama family needs your help,” Spann began the post, which was shared more than 1,100 times.

“After James Spann posted about it, everything blew up. We almost sold out of shirts. We needed $65,000 and God provided every bit of that,” Kelly said.

“Including airfare for the entire family,” Jacob added. “And we knew someone in Dallas that had a VRBO and she gave it to us for the week. People have been so giving to us throughout this whole journey.”

On Oct. 10, two weeks before the surgery, Simeon underwent an MRI to determine if he suffered from the Chiari malformation, caused by the fused sutures.

“Because the back two sutures were closed, it caused the cerebellum of the brain to start growing down into the spinal column. We knew it was likely, but we were praying he would not have it,” Kelly said.

As the surgical team operated on Simeon’s skull and the Chiari on Oct. 24, Kelly walked around a courtyard at the hospital and listened to praise and worship songs, including CeCe Winans' "The Goodness of God."

"That is a song our whole family has held onto during Simmy's journey," Jacob said.

The song’s lyrics include “All my life you have been faithful. All my life you have been so, so good. With every breath that I am able, I will sing of the goodness of God.”

“Jacob’s mother died a couple of years ago and that was really hard on the kids. In the summer, leading up to Simeon’s surgery, they were having a hard time and asking all the ‘What if’ questions,” Kelly said. “Being able to walk with God through these trials and see how God has had a purpose in everything has been incredible. This journey has grown our faith as a family.”

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Strength from family

During surgery Simeon lost three-fourths of his blood but, because of the weekly Procrit shots he began taking at the end of September to build up his blood, he was able to avoid a transfusion.

The day after the surgery, the hospital’s child life specialists arranged for Simeon’s siblings — 12-year-old Lily, 11-year-old Levi, 10-year-old Asher, 9-year-old Ava, 7-year-old Ezra, 5-year-old Ella and 2-year-old Shiloh — to visit him.

“Simmy’s eyes were swollen shut, so he couldn’t see them, but when he heard his siblings and knew they were there, he perked up. After that, he started going uphill. His recovery sped up real fast,” Kelly said.

Besides swelling — Simeon weighed 10 pounds more when he left the hospital than when he was admitted — Simeon experienced a loss of appetite, neck tightness and disrupted sleep.

“The doctor said that Simeon would be able to feel movements in his skull and sensations, which has really messed up his sleep cycle,” Kelly said.

Looking forward, the Franks will send photos of Simeon’s head to the doctor at six weeks post-op and will take him back for check-ups after one year, five years, 10 years and 15 years. Because of the Chiari malformation, Simeon also will undergo an MRI every year.

“We are so very thankful this Thanksgiving. We are so thankful that this surgery is behind us and that Simmy made it through. We’ve seen God’s hand in the whole thing. Simmy isn’t 100% yet and won’t be for a while, but the strides he has made have really been amazing,” Jacob said.

With each passing day, the Franks see Simeon continuing to heal and his return to the happy and content baby who loves music and loves to dance.

“Our prayer is that Simmy will grow and develop like he should and that he won’t have to have any more surgeries for the Chiari,” Kelly said. “Most of all, we pray that his story will continue to glorify God and be a blessing to others.”

To keep up with Simeon, follow Simmy's Journey on Facebook.