Rain Woods began facing challenges well before he was even born. At around 32 weeks in utero, his parents – Chase and Moriah – discovered that he had a large tumor filling up his tiny heart. The tumor was diagnosed as a cardiac rhabdomyoma, and this was the first indication that he may also be suffering from Tuberous Sclerosis.
Tuberous Sclerosis (TS) is a rare genetic disorder resulting in tumors that grow in various organs such as the brain, skin, heart, eyes, kidneys and lungs. They are most often non-cancerous, but they can still cause major health problems and even prove life-threatening.
Rain was born on March 6 and immediately diagnosed with heart arrhythmia and subsequently transferred to the ICU.
About a month later, while still in the ICU, Rain’s parents got the confirmation that he had a mutation in the gene TSC2 that had caused Tuberous Sclerosis Syndrome. He had developed heart failure and was at high risk of serious complications. Meanwhile, he also developed seizures, up to 20 small episodes a day characterized by his tongue clicking and eyes going blank.
As fate intervened, Moriah recalls how board-certified Child Neurologist Dr. Karen Keough began seeing Rain on her rotation at the hospital.
“Dr. Keough was very assertive yet comforting with her willingness to keep trying alternative medications, she was determined to find the right combination of seizure medication,” said his mother Moriah. All the while, Dr. Keough had to ensure that the seizure medications did not interfere with Rain’s other drugs addressing blood pressure, jaundice, and his heart issues.
The seizures lapsed temporarily, but once they returned, Dr. Keough boldly suggested surgical intervention to remove the abnormal area (a tuber) in his brain that was causing them. Obviously, this was a huge source of concern and anxiety for Moriah and Chase – as it is unimaginable to have to think about complicated brain surgery for your infant child. Along with neurosurgeon, Dr. Mark Lee, Dr. Keough assured them that baby Rain was an ideal candidate for such a surgery as his brain and skull bones were so new and resilient that they would heal quickly.
“I could already tell a difference within days of the surgery,” remembers Moriah. “His face wasn’t going blank, no tongue clicking, no eye twitching.” EEG monitoring after surgery joyously confirmed that his seizures had stopped.
Three months after he was born, Rain was finally able to go home for the first time. And he and his parents have never looked back.
Rain is now an active and thriving two- year old who loves playing outside and learning his letters. He was even able to stop his seizure medications!
His parents credit his miraculous outcome to catching his condition early – before he was even born –and the expert skills of a combination of dedicated doctors, including Dr. Keough and Dr. Lee.
“Without Dr. Keough, we would have been lost and blind in a dark cave, I fully believe that,” shares Moriah.
To other parents faced with the terrifying unknown of a serious medical diagnosis, Moriah and Chase recommend finding specialists who you trust and who can give you the most updated medical information possible in an easily digestible manner—or laymen’s terms. They say you must fully understand all the possible outcomes and options so that you can make the best decision to help your child.
Dr. Keough founded and continues to serve as co-director of the Comprehensive Tuberous Sclerosis Center in Austin.