At 28 weeks of pregnancy, my baby girl, Lily (nicknamed Lily Pad) had several strokes in the linings of her brain called Intraventricular Hemorrhages (IVH). Approximately five blood clots resulted because of the bleeding and were blocking the flow of cerebral spinal fluid (CSF). She developed Acquired Hydrocephalus because of the blockages. Initially, my husband and I were told that, in addition to Hydrocephalus and IVH, Lily had a heart defect, cleft palate, and Dandy Walker Syndrome. The prognosis was death or severe handicaps and we should consider abortion.
After much prayer, my husband and I decided to go through with the pregnancy, confident that the Lord had other plans for our daughter. Subsequent MRIs and CT scans confirmed IVH, blood clots, and Hydrocephalus. As evidence of miraculous healing, the cleft palate, heart defect, and Dandy Walker Syndrome were not evident on the test results and those diagnoses were ruled invalid. To minimize head trauma, she was delivered by scheduled C-section at Duke University Hospital and rushed to the NICU.
The doctors did not expect much out of Lily and predicted poor Apgar scores, seizures, and poor sucking reflex. In fact, death was the most likely outcome given to us. However, Lily Pad proved to be a fighter. Her Apgar scores were normal, no seizures were evident, and she could eat just fine. The doctors could not explain her recovery, but my husband and I are CONVINCED she is a miracle of Lord!
At four months old, Lily received a VP shunt to alleviate the accumulation of CSF in her brain ventricles. At five months old she underwent another surgery to replace the first VP shunt because of infection. Her Hydrocephalus is currently under control, her brain has increased in size and development, and she is making developmental strides weekly.
Today, Lily is fifteen months old and is healthy and happy. She struggles daily with physical handicaps which require three therapists visit her each week. Her therapy sessions can be intense because she cries a lot from the pain and stress of the physical tasks she is put through. I do a lot of crying because she cries, but my husband and I refuse to give up! Lily does suffer from some weakness on the left side of her body and overall muscle weakness. Cognitively, Lily behaves like a normal child, with normal intelligence. She began crawling at fourteen months old and we are confident that one day she will walk.
We ask for the Lord's strength as we learn a new way of life, a new sense of normal. Lily will do everything that other kids do, but only in God's timing.
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