HORRY COUNTY, S.C. (WPDE) — Like many eight year olds, Brooklynn Reiter spends her time drawing, playing music, and cheering on her Oakland Raiders.

“Because my dad likes them. And me and my dad watch them,” Brooklynn said.

Now, she’ll add another activity to that list: being a 2019 ambassador for the Pediatric Hydrocephalus Foundation.

Hydrocephalus is a rare brain condition, affecting around one in every 500 babies.

“The fluid around your brain doesn’t drain on its own,” father John Reiter explained.

Brooklynn has undergone one surgery every year to clear the fluid.

“It felt weird at first. But whenever you fall asleep. It doesn’t feel that weird,” Brooklynn said.

As a parent, her father says its tough to see his daughter go through something so painful.

“Its scary. You don’t really know whats going to happen from one day to the next,” John Reiter said. “The shunts on average have a 50% success rate. They either work or they don’t,”

So far, Brooklynn’s shunts have been successful.

Now, her goal is to raise awareness about the rare condition.

“Some people don’t know what the word means and they don’t know how to say it,” Brooklynn said.

Her motto echoes her favorite team.

“Just win baby.”

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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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8-Year-Old Brooklynn Reiter From South Carolina Selected as 2019 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

First time we ever heard the word hydrocephalus was when I was 20+ weeks pregnant at a ultrasound. She was born on 12-31-10 and had her first ETV surgery at 4 days old.

After about a month she was back in surgery for another ETV attempt due to the first one closing. A month later she was in surgery again to place a shunt.

She has had 4 shunt revisions since then. The latest being just this past November 4th, you can find a more in depth post about that on my Facebook page.

Brooklynn has also had surgery to correct the nerves behind her eyes due to the pressure. So, she has had a total of 8 surgeries due to hydrocephalus.

She was also diagnosed with IS as a baby but has since been seizure free.

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.