North Liberty, IA

Lincoln Ortman is like most 5-year-old boys: He loves to run, jump, climb, and ride his bike.

But unlike other boys his age, those activities put Lincoln at risk for severe injury.

“We have introduced him to things like video games to keep him at a more ‘down’ lifestyle,” says Lincoln’s mom, Missy Ortman, of North Liberty. “Lincoln was not able to participate in things like trampolines and football, so teaching him that those things can be dangerous for him – and keeping his brothers from wrestling and shoving – is important at our house.”

Lincoln was born with a hemangioma – a non-cancerous growth caused by an abnormal collection of blood vessels – that started on his leg. By the time he was five months old, it had become a segmental hemangioma, involving more than one part of his body, and spread up his leg and into his diaper area. When his parents grew concerned about the birthmark bleeding, they took him to their dermatologist.

Living in South Dakota at the time, the family’s dermatologist diagnosed him with PELVIS syndrome, which included the hemangiomas as well as kidney and urological issues. Doctors also discovered Lincoln had a single kidney and a tethered spinal cord, which meant tissues attached to his spinal cord limited his movement, causing an abnormal stretching of the spinal cord. The abnormal stretching caused a syrinx, a fluid-filled cavity, to form within the spinal cord. Their local neurosurgeon recommended the family wait until Lincoln was 18 months old before they attempted surgery, but Lincoln’s dermatologist – whom he saw for the hemangioma – encouraged the family to get a second opinion. At that point, they called University of Iowa Stead Family Children’s Hospital.

“To get a diagnosis that your child is going to have lifelong issues and needs a major surgery before they're a year old was extremely difficult and fearful for us. Coming here and hearing the doctors say, ‘We've seen this before, we can help you, we have a plan,’ that was a huge burden taken off of our shoulder,” Missy says.

PELVIS syndrome affects between one and four children in the US each year. Missy explains, “No one in our area had ever seen anything like this. It was important to find the doctors who had experience with the urological issues and to find the neurosurgeon that could take care of his spinal cord.”

For more than four years, the family made the seven-and-a-half hour drive to Iowa City, sometimes five or six times a year.

“He sees so many different doctors and so many different specialists, it’s hard to get a whole bunch of doctors talking to each other when they’re at different hospitals. To be able to go to one place where they work together because they’re all under the same umbrella is really a beneficial thing,” says Chris.

Missy adds, “We link surgeries or procedures together to reduce the risk of sedation. It's just amazing to be at a hospital where they care for children and they know how to make a child feel secure and safe in their environment,” Missy says.

In September 2014, knowing Lincoln’s treatment would be long-term, the family decided to move to Iowa to be closer to Lincoln’s medical team.

Chris says, “For Lincoln to recover, it would be a three-hour procedure, an overnight stay, and then drive home the next day. Now he can just come and have the procedure and then go home and rest.”

Today, Lincoln has overcome so many of the things that could have held him back.

“Lincoln is doing amazing. He is growing and thriving—as normal of a 5-year-old as he can be,” Missy adds. “He is excited about starting school, which is a great accomplishment for him.”

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