I’m Just Sayin’:

Thanksgiving offers a time for reflection, yet Christmastime always makes me look back and be thankful, too.

My husband and I received the greatest gifts of all when our twins, Becky and Josh, were born after we tried for years to have children. Six years ago this month we brought our son and daughter home from the hospital. They were full-term, happy and healthy, and we were thrilled.

When Josh was about 6 months old, his head grew very large very quickly. He had developed hydrocephalus, which is caused by a buildup of cerebrospinal fluid in the brain. The increasing pressure caused the ventricles, which hold the fluid, to expand, resulting in brain damage. At the time, there was no way to know if that damage was mild or severe. Learning that Josh had a lifelong, life-threatening condition was heartbreaking, and there was no way to know what the future would hold.

A couple of months after his diagnosis, Josh had surgery to place a shunt to drain the excess fluid away from his brain and into his abdomen. I can’t describe the fear that strikes a mother when she sees her baby being wheeled into an operating room for brain surgery. He will now have a shunt for the rest of his life and, because about 50% of shunts fail within two years and must be replaced, he will likely have more surgeries.

Josh’s first shunt lasted about a year and a half, when he had additional surgery to replace it. His second surgery was complicated by some breathing difficulty, which significantly raised the chance that they might not be able to remove his breathing tube after the procedure. The risk of him dying from not replacing the shunt outweighed the risks of surgery, and the neurosurgeon decided to go ahead with the operation. Thankfully, Josh sailed through it.

Because of the damage to Josh’s brain when he was an infant, he lost all of the developmental milestones he’d made, and at a year old he went back to being just like a newborn. He started receiving physical and occupational therapy, later adding speech therapy, all of which he still has today.

In addition to the therapies, multiple MRIs, CT scans and examinations by the neurosurgeons, neurologists, urologists and ophthalmologists at Children’s Hospital Los Angeles have helped Josh to keep up with his friends in school, both physically and academically.