Kristie on our Contributor:
Hilary Harris is a pastor at The Fathers House in Vacaville, Ca. where her husband Rich is also a Worship Pastor. Their lives were changed when their first daughter Jane was born. Jane lives with epilepsy, blindness, immobility and special needs. It is Hilary’s desire to share their story through writing and speaking, to bring hope, healing and laughter to others who have faced disappointment and tragedy. It is such an honor to watch Hilary preach. Her self-deprecating humor and authenticity shines through and makes you feel like her message was crafted just for you. I have the utmost respect for the grace with which she has shepherded her family through the wake and devastation Infantile Spasms has caused. To learn more about Hilary, check out her blog at hilaryharris.org.
On January 11th, 2014, our dreams came true and I naturally delivered a healthy baby girl named Jane. Jane means “God has been gracious”. After two days in the hospital, we brought home our healthy baby.
The details of what took place after we brought Jane home are some that will never leave my memory. After a full day at home, we brought Jane to the hospital for her routine newborn check-up. After assessing Jane and taking her temperature, the nurse assisting us quickly left the exam room and returned with a very concerned looking Doctor in blue scrubs.
As calm as she could, the doctor began to ask us several questions. “When was the last time she peed? Has she experienced any head trauma at home? How long has she been like this?” All I could think was, “I have known this child for about 72 hours, you tell me!” Obviously, that is not what I said and instead answered all her questions, very aware that the tension growing in the room was palpable.
After our very brief, extremely fast pop quiz, the doctor told us as kindly as possible, words that still send a lump to my throat, “your baby does not look good”. On that note, Jane was stripped down from her pajamas that I had so thoughtfully picked out, placed on an exam cart and rushed by clinic staff, with my husband following, to the adjoining emergency room. At that moment, I was not sure if I would be bringing my daughter home ever again.
For reasons still unexplained, Jane’s blood sugar upon admittance was almost unreadable, and during that time she had been experiencing several seizures. But she was alive. She would be taken by ambulance to the nearest intensive care unit which happened to be 45 minutes away. Jane had undergone a traumatic brain injury due to low blood sugar, possibly caused by a condition called hyperinsulinism, which soon resolved itself. This injury, however, had left her with sporadic and intractable seizures, meaning they cannot be controlled, and which we would later learn, are permanent. Our newborn’s first days of life would not include beach trips and photo shoots, but rather feeding tubes, IV lines, blood transfusions, and medications.
After one month in ICU we were released to take Jane home. She was on an anti-seizure medication and one blood sugar medication, but otherwise happy and healthy.
At six months old, her seizures returned despite her anti-seizure medicine. Her seizures were growing more frequent and more powerful. Yet every time we called to report this activity they were deemed, “not an emergency”. Regrettably, Jane’s seizures were left untreated, causing permanent damage including blindness and cognitive delay.
Thanks to the efforts of Mickie’s Miracles, when Jane was one year old, we were directed to a children’s hospital that specializes in pediatric epilepsy. After only 24 hours in their facility, Jane was diagnosed with Infantile Spasms and given a medicine that controlled her spiraling seizures. They were also able to facilitate extensive tests that gave us answers we had been searching for over six months.
Jane is almost four years old and making progress despite her intractable epilepsy. She was put on the ketogenic diet and we are seeing positive progress. Jane is overwhelmingly strong and brave. She is beginning to speak again, is strong in her muscles and doing well in school. She has become more receptive to tactile exploration and more socially adaptable. We are so thankful for every miracle along the way in our unexpected journey