At 26.5 gestational weeks, I went into the hospital due to preeclampsia. Ten days later, on the evening of November 19, 2004, the doctor decided it was time to deliver my baby, as they could not control my blood pressure. Skylene was given an 80 percent chance at life being born premature at 28 weeks.
Skylene was expected to stay in the NICU until she was close to 40 weeks gestation. Two days before she was supposed to be coming home to be with her family, she was diagnosed with Strep B & Bacterial Meningitis. The doctor’s thought it was in her best interest to have a spinal tap done to test her CSF fluid.
When the results came back, the doctor’s revealed that she had a stage II/III bleeding in the brain and was diagnosed with hydrocephalus. Skylene had to be sent to a hospital over two hours away for the shunt surgery and to spend the rest of her time in the NICU. The doctor also said she was having minor seizures because of the hydrocephalus.
After her two brain surgeries as an infant, she spent a total of five months in the hospital. The next three years of her life were spent taking her to many doctor’s appointments, vision/speech/physical/occupational therapy, and Early Intervention.
Skye finally started to walk without the help of braces or something to hold onto around 3 and a half years old. She started talking using baby sign language and using simple words around the same time.
Once Skye was of school age, she had an IEP that was followed, and she showed progression each year.
Skylene did not have any shunt revisions until the age of 8 years old (almost 9). She was doing fine and out of the blue, she had a malfunction and was rushed into surgery. They had to replace part of her shunt. About a year later, she had another malfunction and needed another part of her shunt replaced.
About two months after the second revision, she started showing signs of a malfunction, but her tests came back normal. A month later, Skylene was tired and not feeling well. That night she had a seizure so we called 911.
Skylene finally came out of her seizure and started talking—but her words were not making any sense. The paramedics took her to the hospital. While waiting for the doctors, Skye had several other seizures. The nurse gave her Ativan in her IV to “calm her down” and she was rushed in for MRI.
An hour later, the doctor says that she stopped breathing during the test. She was resuscitated but was not conscious.
The next four days were spent doing additional tests while our family and friends prayed for her to wake up. After confirmation that she also suffered a stroke and had no brain activity, our family had to make the horrific decision to let her be at peace. Skylene passed away at the age of 10, on March 22, 2015.
Skylene saved the lives of 5 other individuals ranging from ages 2-56 through organ donation. Skylene was the most giving person, if she knew she gave this gift of life, she would be so proud!
Hopefully we will have a cure for Hydrocephalus, not just a Band-Aid so other individuals and families do not have to go through what our family, and many other families, have gone through.
-Quelyn Ayon, Skylene’s mom