Caleb Wiggs is just like any other five-year-old.

He can be shy around strangers . . . at first.

He loves cheering on his older sisters at basketball games, observing that his mother “is pretty loud.”

And one can’t help but feel Caleb’s joy when he shares a grin.

In fact, Caleb will be sharing that smile – and his story – with millions of people as one of two children who have been selected as this year’s national ambassadors for Hydrocephalus Awareness for Incurable Brain Condition.

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By Congressman Roger Marshall

This week Caleb Wiggs from Leoti, Kansas celebrated his fifth birthday.

Caleb is grateful for many things this milestone, but perhaps one thing that many 5-year-olds overlook, he is grateful for his life. At the age of five, this condition has caused him to undergo three life-saving brain surgeries.

Caleb has been selected as one of the 2019 National Ambassador for Hydrocephalus Awareness for the Pediatric Hydrocephalus Foundation. As an ambassador, he will educate people across the country on this disease that so desperately needs medical advancements and treatment solutions. He will also participate in the 2019 Hydrocephalus Issues & Action Conference in Washington this August where he will meet with my fellow lawmakers.

Hydrocephalus can develop at the time of birth or later. As an obstetrician, I understand the severity of this condition from having to prepare new mothers for the challenges ahead and ensuring the best care for these newborns. Sadly, one to two of every 1,000 babies are born with hydrocephalus but there is hope. Robust medical research partnered with patient advocates like Caleb can bring new advancements to the finish line.

Caleb, your bravery and voice will have an impact on thousands of lives, including the many families fighting this condition.

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5-Year-Old Caleb Wiggs From Kansas Selected as 2019 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Caleb came into this world at 25 weeks gestation, weighing 1lb 8oz and only 11 inches long. He spent the first 5 months of his little life in NICU. With many doctor visits and a lot of respiratory issues, Caleb spent a lot of time in the hospital. In October 2015 (20 months old) We were at our routine visit with his neurologist, when Dr. Christopher Smyser, St. Louis Children’s Hospital, looking at his chart noticed that his head had grown 4cm in 4 months.

He asked us to go to the Neurosurgery clinic and Dr. Limbrick would clarify what was going on. When talking to Dr. Limbrick he told us that Caleb had hydrocephalus and needed to have surgery as soon as possible. As a mom and dad of 4 other very healthy children this was some of the scariest news we could have been told. 18 days later we went in for his first brain surgery. On October 19th, Caleb had an ETV, (Endoscopic Third Ventriculostomy), put in.

Everything was going great! On November 14th, Caleb had a 35 min long seizure and was life flighted to Children’s hospital, where he was intubated and sedated for 3 days and what put on an EVD, (External Ventricular Drain), until he showed no sign of infection. After no infection he had his first VP shunt put into place. This was such a blessing! Our little man spoke some of his first words while being in the hospital. On Christmas day, Caleb started running a fever.

While corresponding back and forth with his neuro-team, he had frequent visits to the hospital but we were told that he had 2 viruses which are like common colds and the fever was related to that. After roughly a month of being in and out of the hospital and a lot of antibiotics. The fever was still coming back. The team decided to tap into the shunt and test the spinal fluid. He had a critical infection and we were admitted back into the hospital.

They removed the shunt and he had another EVD placed again for several days until he was infection free for 48 hours. Then placed another shunt in February 2016. We have been so blessed to of made it almost 3 years and no shunt revisions. In the coming weeks we are facing another surgery, because Caleb has started building fluid up on his brain.