Ryan was born on May 3, 2005, 3 months premature weighing 1 pound 15 ounces in Washington, DC with a birth defect called Dandy-Walker Syndrome and congenital Hydrocephalus. He was placed on a ventilator 6 times, had 8 blood transfusions and spent 156 days in the neonatal intensive care unit (NICU) during his first year of life.
Ryan’s Hydrocephalus is treated with a VP shunt. The shunt malfunctioned two days after it was inserted and required an immediate revision in the OR. During the shunt revision surgery Ryan developed a brain bleed that caused him to begin having seizures.
For almost a month he was in and out of the hospital as we tried to control what was now up to 8 seizures a day. When Ryan seizes the left side of his body becomes paralyzed, he chokes on his saliva and vomits anything in his stomach. After much trial and error with various anti-epileptic medications his seizures were brought under control.
A scientific meeting or a coordinating committee and a workshop is all we need to help kids like Ryan. Families like ours need more information on the progress in the epidemiology, pathophysiology, disease burden, treatment improvements, diagnoses and awareness for Hydrocephalus.
We also need the National Institutes of Health to take the lead in sponsoring a workshop to increase awareness and set national research priorities for Hydrocephalus.
We need a national voice for the 1 million Americans who are affected directly by Hydrocephalus and who presently rely on a 58 year old technology to treat their Hydrocephalus.
The picture above is Ryan with his neurosurgeon Dr. John Myseros from Children’s National Medical Center. When we were about 20 weeks into the pregnancy and had just received the Dandy-Walker Syndrome and Hydrocephalus diagnoses about Ryan (then unborn) we consulted with him and he told us that one day you are going to look at you Ryan and you will not see Dandy-Walker, you will not see Hydrocephalus, you will not see some of the associated conditions you are now learning about that you have never heard of, you are just going to look down and see your son.
He was right.
I thank God every day for the blessing he gave Andrea and I.