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“Hydrocephalus” isn’t a term many are familiar with, but Rachel knew what her doctors meant when they told her that her unborn child, who at 20 weeks was too small still to have its sex determined, had the condition. It meant that the child she was carrying, like her previous child, Raquel, would be born with “water on the brain.”
Hydrocephalus is a condition where excess spinal fluid builds up in the brain cavity, causing pressure and preventing proper development of the brain. Rachel’s previous daughter, Raquel, had not lived long after birth, and doctors were pessimistic about this pregnancy as well. Despite the prognosis, Rachel was determined to give her unborn child the best possible shot at life.
When Nettie (legally named Marie Raenetta) was born on December 4th 2012, and her head was 46 cm in circumference. The average circumference of a healthy full-term newborn’s head is 34.5 cm. Her mother carried her to term, and she was born at a healthy, average weight. Nettie’s hydrocephalus was severe, and the ventricles in her brain did not develop. She was also diagnosed with cerebral palsy, epilepsy, blindness, and Global Developmental Delay.
After many failed treatments and medications, doctors sent Nettie home with her family for palliative care (meaning they had determined she was terminal). Nettie, however, had other plans. She had such a joy and zest for life that she overcame pneumonia multiple times, despite doctors’ prognoses to the contrary.
When Florida legalized the use of CBD for children with epilepsy, Rachel was contacted by some caregivers who wanted to provide her with low cost, high quality CBD oil for Nettie. Desperate, as her daughter was on 10 medications for her seizures, which were now happening around the clock, Rachel agreed to try the CBD oil. And just like that, Nettie became seizure-free.
Nettie was taking a very high dose of the CBD oil. She used 10mL every two weeks, taking two drops in the morning and at night. At first, she was using an oil that was tested at less than 3% THC. In time, Rachel did notice that Nettie was suffering from a side effect from the medical marijuana: the little girl was experiencing cotton mouth.
That cotton mouth was itself a minor miracle; one of the effects of Nettie’s conditions was that she was unable to swallow or handle her own saliva. Her mother would have to remove roughly 300mL of fluid daily. Once the cannabis oil treatment began, that amount declined to roughly 10mL a day, leaving Nettie less swollen due to retained fluids.
To combat that dreaded cotton mouth and offer her daughter comfort, Rachel would rub the inside her mouth with moist cotton swabs. At first, it was simply a kindness, one that would make Nettie smile. Then, something impossible happened; Nettie started sucking on the cotton swabs, trying to suck the water out. Doctors didn’t believe that level of progress would ever be possible for Nettie, but she never seemed to care what they had to say.
They insisted that she was totally blind as well. Children with blindness or limited vision related to hydrocephalus have been anecdotally reported to see blue better than most other colors. Perhaps that is why Nettie loved Finding Nemo so much. Her mother believes with her whole heart that Nettie could see, despite what doctors said. She could track people, watch objects, and smile at things and beings she loved.
In addition to her mother and her three siblings, Nettie also dearly loved her therapy dogs, which were a source of stimulation and joy for the little angel. She also loved listening to music with her mother, especially “Unforgettable” by Nat King Cole, which they listened to nearly every day.
At the end of summer, Nettie fell ill and was taken to the hospital. While there, doctors discovered an air bubble in her chest but insisted that she was not strong enough to undergo surgery. They also said she would have to be taken off the CBD oil and put back on the seizure medications that didn’t work before they would even consider the operation.
Desperate to get her the quality medical care she needed, Rachel had switched Nettie to a program called CMS, a program for children with special medical needs. Rachel was told this was the best option for Nettie, but the CMS doctors literally refused to treat Nettie, stating she was terminal and a “medical mystery.” With a primary care physician who refused to treat her or refer her elsewhere, Rachel had no choice but to take her youngest daughter home without the treatment she needed.
Nettie certainly seemed strong enough to make it through surgery. She lived for weeks after her discharge, struggling but always a bright light, full of life and joy. When it became clear she was in pain, her mother changed her CBD oil to one with 6% THC to help assuage Nettie’s discomfort. As the bubble expanded, Nettie’s chest distended, bruising around the ribs.
On her last night here on earth, Nettie’s left eye exploded as a result of her condition. Her mother, abandoned by doctors, cared for her precious, ailing daughter in her own home, falling asleep with her one last time before she passed in the night. Nettie left this world on August 27th, 2014, surrounded by the people she loved.
While her condition was horrific, her treatment at the hands of the medical establishment was worse. Nettie deserved the chance to fight, especially when she was responding so well to the cannabis oil treatment. Doctors never tested her to see if she was improving despite her mother’s pleas, but Rachel knows from the seizure-free hours, the smiles and the cotton-swab sucking that Nettie was unquestionably positively impacted by her high-CBD cannabis oil treatment.
Nettie’s mother maintains a Facebook group in her memory, which readers can follow here. Hashtags #TEAMNettie and #Doit4Nettie are also being used in support and memory of Nettie. Today, Decemeber 4th, 2014, would have been her second birthday, and in honor of this angel, it is the first annual #Doit4Nettie Day. It’s time to wake up and legalize cannabis for adults and medical cannabis for everyone, so that those who struggle and suffer can do so with more hope, less pain, and more dignity. Do it for Nettie, and the countless other children whose lives would be extended or improved by safe, legal access to cannabis oil.
For previous Ladybud articles about children who use cannabis, click here.