6-Year-Old Elyse Clough From New York Selected as 2016 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Elyse was born on May 26, 2009, 3 ½ months premature, weighing just over a pound. While in the NICU, she had a major brain bleed, which caused her to have fluid accumulation in her brain. After two spinal taps while she was in the hospital, we thought the issue with the excess fluid was resolved.

On October 12, 2009, just one month after being discharged from the hospital after birth, Elyse presented with symptoms that we now associate with hydrocephalus. She woke up extremely fussy, vomiting profusely, and when she opened her eyes, only white could be seen. We took her to the pediatrician, who immediately recognized this as hydrocephalus.

We rushed her to the hospital where she had emergency brain surgery to insert her first shunt. This was a terrifying experience. We were unfamiliar with a shunt and with hydrocephalus, and the situation was extremely overwhelming. About three weeks later, we brought Elyse back to the hospital fearing her shunt had failed, since we now recognized the symptoms.

The standard tests that are performed showed no abnormalities, and despite our pleas and efforts, she was released to go home. Later that same week, we rushed her back to the hospital where they determined her shunt had indeed failed. This second shunt failed in June of 2010. After this, Dr. Satish Krishnamurthy, Elyse’s neurosurgeon, along with a group of patients and families struggling with hydrocephalus realized the need for a cure and a support group for hydrocephalus.

That September, REaCH Organization was created. REaCH stands for Research, Educate, and Cure Hydrocephalus. On December 28, 2014, Elyse woke from a nap having a seizure. Again, we rushed her to the hospital, to find that her shunt had failed again. This fourth shunt only lasted until September 5, 2015.

She presented again with a seizure due to the increased pressure in her brain from the excess of spinal fluid. Again, the shunt failed. This shunt revision has been the worst experience for Elyse so far. She unfortunately suffered another brain bleed while the catheter of the shunt was removed, and her recovery has been much slower than before.

It has been very difficult for the entire family. During this recovery, we had a benefit in honor of Elyse to raise money for hydrocephalus research. With the help of many people and businesses, we were able to raise over $10,000 that was given to the Upstate University Hydrocephalus Research Fund.