Mixed blessings: Sully Nagel's rare nevus condition brings both trials and joys

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The Nagel family’s Christmas card features this photo. From left are 3-year-old Lincoln, Carl, Beth and Sully.
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A professional photographer, Amy Lawrence, donated her services to design the cover of “Sully’s Snacks & S’more.”

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DELL RAPIDS, S.D. — When Carl and Beth Nagel anticipated the birth of their second child five months ago, they knew this addition would irrevocably change their lives forever, just as the arrival of son Lincoln had three years earlier. But their second son arrived with some unique challenges — and some blessings along the way — they could have never expected.

Sully’s arrival

Sullivan “Sully” Thomas Nagel was born July 26 to Carl and Beth, who live in Dell Rapids. Carl, formerly of Worthington, works for Wells Fargo Bank, and Beth is employed as a speech therapist at the Dell Rapids Elementary School.

“His name came from the pilot who flew the plane into the river,” explained Beth, referring to Chesley “Sully” Sullenberger, who carried out the emergency ditching of US Airways Flight 1549 in the Hudson River in January. “He’s not necessarily named after him, but we heard the name and liked it, and we thought it went pretty well with Lincoln, so we decided to name him Sullivan and call him Sully.”

When Sully entered the world, it was immediately noticeable that he had what looked like a large black bruise on his back. But it wasn’t a bruise — it was a birth defect, a giant congenital nevus or mole.

“His condition wasn’t something that they could have detected in utero,” Beth explained. “It was actually darker black when he was first born. It was definitely a shock. You expect that if everything looks good at your 20-week ultrasound, everything’s going to be good, that you’re going to have a healthy baby.”

The nevus is referred to as cape-style, covering most of his back, below his hairline all the way to his waist and wrapping around the sides a bit.

“The occurrence, for one this size, is one in a half a million children,” detailed Beth. “It doesn’t discriminate between gender and race — these kinds of nevus can be found in every kind of people all over. We knew absolutely nothing about it, and it’s so rare that the doctors couldn’t tell us how to take care of it.”

The Nagels learned that the nevus that covered their son’s back wasn’t just an aesthetic problem; it comes with associated health risks.

“Because the birthmark carries a cancer risk, it has to be removed,” Beth explained. “It grows in proportion to him, as he grows it will grow with him and continue to get bigger. … The nevus cells go all throughout his body. Fortunately, he doesn’t have any spots on his brain, which can be a related complication. His MRIs have been clear. If there had been spots on the brain, there’s a chance the disease could progress, in which case it’s fatal. That happens in about 30 percent.”

Course of treatment

Since Sully’s condition is so rare, the Nagels turned to online sources to determine the best course of treatment for their child. In particular, they found help at www.nevus.org, the Web site of Nevus Outreach Inc., an organization founded by families impacted by large nevi and neurocutaneous melanocytosis.

“All the information we’ve found out about it, how to help Sully and get this taken care of, what the current best practice is, was from Web sites,” Beth said.

While other doctors unfamiliar with large nevi said treating Sully would have to wait until he was older, the Nagels learned that the process should start quite soon.

“To minimize the cancer risk and ease of removal, they start surgery at a young age, as soon as he’s able to tolerate anesthesia,” Beth said. “So his first surgery will be March 25.”

During the surgery, expanders will be placed under Sully’s good skin. Through ports in his skin, the balloon-like implants will be injected with fluid over the course of time, expanding and stretching the good skin.

“They’ll take those expanders out after three months and remove as much of the nevus as they can, taking into consideration how much good skin they’ve stretched, using that to replace what they remove,” Beth explained. “Then he’ll heal for four months and they’ll go in and put another set of expanders in and do it all over again. We’re expecting at least six surgeries, due to the size of the nevus.”

The doctor who will perform the surgeries is Dr. Bruce Bauer, who practices in Chicago.

“The reason we chose him is, because of one of the many miracles of this whole process, not only is he the biggest expert in removing nevi in the world, and he’s removed more in children than anyone, but he also happens to be an in-network provider with our insurance. So we decided to go with him because he has the most experience and is covered by our insurance, even though we’ll be undertaking a lot of expenses by going to Chicago.”

A cookbook is born

Although their insurance will cover the major medical expenses, the Nagels anticipate multiple trips to Chicago in the coming years and know that many additional expenses will be incurred. After reading online about another family’s fundraising effort, Beth decided to put together a cookbook for Sully.

“When we started thinking about what kind of benefit we could do — we had so many family and friends asking how they could help — I thought everybody loves a cookbook, and it would be a great keepsake for our family to put all our favorite recipes from friends and family in one place,” Beth related, adding that it also gave her a project to focus her energies. “Honestly, at that time, when we were dealing with the initial shock and everything, it was really good to have something to do, something productive to work on instead of think about all the feelings and worry.”

The resulting book, “Sully’s Snacks and S’more,” is 200 pages and contains more than 500 recipes.

“There are recipes in there from our families and our friends, our church friends, work friends,” Beth detailed. “I spent hours and hours typing. It was probably about a two-month project; I submitted it on Oct. 13. It was a lot of typing, especially with a 3-year-old, and my 3-year-old is very busy.”

A good problem to have

The finished cookbooks — all 789 of them — were deposited in the Nagels’ garage about 10 days ago. But they didn’t have to worry about storing them for long. Within a matter of days, they were sold out, with a second order on the way.

They are especially grateful to their network of family members — grandparents Jacoba Nagel, Worthington, and Deb and Mark Palmquist, Canova, S.D. and great-grandparents Don and Mary Palmquist, Sioux Falls, S.D., and Lloyd Roling, Salem, S.D., for the support they’ve received since Sully’s birth and in putting together and selling the cookbook. With their help, Carl and Beth have been able to keep life in perspective.

Beth summed up how their lives have changed in the cookbook’s dedication:

This cookbook is dedicated to my son, Sully, whose precious life has brought more joy to our family than his father and I could ever have imagined.

Sully, you are a miracle! You were given to us by our Heavenly Father, and we couldn’t be more proud to parent you and your big brother. We consider it an honor and privilege to be entrusted with the responsibility of raising you. While you won’t be able to read this letter for a few years, I want you to know that we never once considered your life as anything other than precious. You are beautiful. Even your nevus is a gift from God. He has already used your birthmark and our experiences with it to soften our hearts and unite lots and lots of people together in prayer. I’m sorry that you’re going to have to endure some pain, but I promise that when you need me I’ll be there to hold you and love you and pray for you … always.”

On the Net:

For more information about ordering “Sully’s Snacks & S’more,” go to http://newsfromthenagels.blogspot.com/; or e-mail bethnagel@ymail.com.

Tags: lifestyle, people, nagel, sully, nevus, cookbook