Q: Why was Naya born so early, at 28 weeks?
A: I was originally pregnant with twins. At the 13 week ultrasound, we found out Twin A had a serious deformity called an Omphalocele, where the internal organs grew outside of the body. Due to the severity of the deformation, Twin A was reduced at 16 weeks. We speculate that it caused an infection in utero, causing Twin B (Naya) to develop sepsis and ultimately I went into early labour.
Q: Will Naya grow out of Hydrocephalus?
A: There is no cure for Hydrocephalus. But we hope as she grows older, she will stabilize and not require so many surgeries.
Q: Does she have a brain damage?
A: Naya has a right hemisphere brain injury. This is a result of her brain bleed and repeated brain surgeries.
Q: Is she handicapped?
A: She displays typical Right Hemisphere Brain Damage (RHD) functioning. She is not able to visualize things like most people. Attention, perception, problem solving, memory and social communication are all affected. She is also fine and gross motor challenged. She has low muscle tone and needs assistance doing daily things including: bathing and toileting and dressing. She needs to be closely watched when using stairs and doing other physical things like running. The muscles on the left side of her body are smaller than the right side – something we noticed when she was a baby. This is directly related to the right side brain bleed at birth.
Q: Why has she needed so many surgeries?
A: Having 29 surgeries by the time you are 7 years old is not normal. Even for someone who has Hydrocephalus. Neurosurgeons don’t know why she has had so many complications. All we can do it hope that things stabilize as she gets older.
Q: How do you know when her shunt has malfunctioned?
A:. Seizures. Headache. Vomiting. Slow to process what she hears. Loss of coordination – tripping and falling, bumping into walls. Rubbing her eyes and her eyes deviating to one side.
Q: Have all her surgeries been Hydrocephalus related?
A: Of her surgeries, 27 of the 29 have been Hydrocephalus related. Her first surgery at 9 days old was to fix a heart defect- PDA ligation. And then surgery number 4 at 2.5 months old was to repair an inguinal hernia.
Q: Does Naya function normally?
A: When you first meet Naya you wouldn’t know she has a disability. She behaves much like any other child. But after spending a few minutes with her you will notice there is something different. She is developmentally delayed. She has been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). She is unable to process things like facial expressions and tones of voice – ie sarcasm.