Two sons, 18 brain surgeries and a walk for a cure – Houston Chronicle

Ryder Bruen underwent three brain surgeries by the time he was 6 months old. He had 10 within 1 years. He spent three birthdays in a row in the hospital.

In all, the 13-year-old Houston boy has had 17 brain surgeries, all for a condition known as hydrocephalus, a life-threatening neurological condition in which a buildup of fluid in the skull causes the brain to swell. Kai, his twin brother, has the same condition, though hes had only one brain surgery.

Weve lost count of the ER visits, the hospital stays, the CT scans, MRIs, X-rays and the headaches and vomiting that come with having hydrocephalus, says Heather Bruen, Ryans mom, who gave birth to the boys at 26 weeks. Its heartbreaking anytime you notice either one seems down, you worry its the hydrocephalus. You never let your guard down.

The Bruens, along with about 350 others, participated Saturday in the Houston Walk to End Hydrocephalus, an annual fundraiser to compensate for the limited research money allocated by the government. The Houston walk is one of 44 staged across the country each year.

The condition is not well known, but its more common than people might realize. In its different forms besides spontaneous cases in young children, it can occur as a result of brain injury and in older adults with diminishing mental function it affects about 1 million Americans.

That includes 1 in every 770 babies in the U.S., about the same as those with Down syndrome and more than spina bifida or pediatric brain tumors. Yet Down syndrome receives $60 million year in National Institutes of Health funding, hydrocephalus only $10 million.

There is no way to prevent hydrocephalus, and theres no cure. Standard treatment requires surgery to insert a flexible tube, known as a shunt, that redirects the fluid buildup to parts of the body where it can be absorbed.

But the shunts can be unreliable theyre the size of spaghetti, with a hole in the center often requiring patients undergo follow-up surgery to unclog blockages, adjust placement or insert a new one. The all-time record for such shunt surgery in one patient is 256.

Shunt repair is why Ryder has had so many surgeries. Its also why the Bruens moved from Louisiana to Houston in 2010 to be closer to a top childrens hospital. And its why they travel with the their sons latest brain scans and always know the location of the nearest hospital.

Theyre an impressive family, says Dr. Dan Curry, a pediatric neurosurgeon at Texas Childrens Hospital and Kais doctor. Two brave kids putting up with the problems that come with shunts and parents with the patience of Job.

The Bruens have some aspects down to a science. When either kid complains hes becoming nauseated its happened at Disney World and at restaurants Heather is quick to pull out a hospital-grade vomit bag and manage the moment adroitly, without people nearby even noticing.

Still, because it never goes away, she says it never gets easier emotionally. She thinks daily, she says, about their eventual adulthood, partly because both also have cerebral palsy, the common movement disorder. Kais is severe enough that he needs a wheelchair.

Heather is more confident Ryder, who can be seen in a video on her Facebook page urging people to attend the walk, will achieve adulthood. He hopes to become a paramedic one day.

Hydrocephalus doesnt have to be an obstacle to such aspirations. Those at the walk featured a number of high-achieving patients, such as Jamie Wright, a student at McGovern Medical School at UTHealth pursuing both an M.D. and a Ph.D. despite constant headaches. She plans to become a neurologist specializing in the transition of hydrocephalus patients care from childhood to adulthood.

Saturdays Houston walk appeared on target to reach its $60,000 fundraising goal, which will add to the roughly $9 million the Hydrocephalus Association has raised for research since 2009. More money is needed because the condition still isnt that well understood, including the basic science and the causes. Dr. Stephen Fletcher, a neurosurgeon at Childrens Memorial Hermann Hospital, said research slowed after the development of shunts, because they were seen as effective treatment.

No one holds out more hope for a cure, or at least better treatment, than Heather Bruen, who acknowledges how much her boys enrich her life.

I feel very fortunate to have the life I do, to have my kids, she says. Life can be so serious at times for hydrocephalus families, but the boys smile and laugh and have a good time. Im thankful for everything I have.

todd.ackerman@chron.com

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Two sons, 18 brain surgeries and a walk for a cure - Houston Chronicle