Following doctorâ€™s orders, Brian and Damaris Higuera drove home to let their baby die.
Not quite nine months old, Sadie had already endured a lifetime of medical treatments. Due to a rare genetic disorder, Schnizel Giedeon Syndrome, one of her kidneys malfunctioned, her intestines were displaced and her brain lacked the nerve fibers linking the two hemispheres.
Up to 300 seizures a day punished her little body. Nothing helped: not surgeries, opioids, steroids, nor consultations with experts from Rady Childrenâ€™s Hospital in San Diego and the Mayo Clinic in Minnesota.
â€śItâ€™s time for you to be your daughterâ€™s hero,â€ť one doctor told Brian Higuera, â€śand discontinue her medications.â€ť
That would have been a death sentence. Five years later, though, Sadie is alive and seizure-free. Her parents say she was saved by an unorthodox treatment: cannabidiol, a marijuana extract commonly called CBD.
Hampered by a shortage of research, many doctors remain reluctant to prescribe marijuana or its chemical compounds to adults, let alone children. But, inspired by stories like those of the Higuera family, scientists are beginning to test pot-derived substances â€” especially CBDs, which have no psychoactive properties â€” on young patients.
In June, the FDA approved a CBD-based drug, Epidiolex, as an epilepsy treatment for patients as young as 2-years-old. At UC San Diego, researchers led by Dr. Doris Trauner have a $4.7 million grant to study CBD for children between the ages of 8 and 12 who have been diagnosed with moderate to severe autism.
â€śWhile we are hopeful for benefit, it may be at the end of the day that CBD will do nothing for kids with autism,â€ť said Dr. Igor Grant, director of the schoolâ€™s Center for Medicinal Cannabis Research, who said the study should begin in early 2019.
â€śBut if it helps them, my God, thatâ€™s a blessing because we donâ€™t have a really great treatment for children with more severe autism.â€ť
More than a century ago, marijuana was found in numerous medications sold in the U.S. In 1937, though, the federal government outlawed the substance. In 1971, the Controlled Substances Act lumped pot in with heroin, peyote and LSD, classifying them all as Schedule 1 drugs, having â€śhigh potential for abuseâ€ť and no recognized medical use.
Because of these legal restrictions, U.S. research on the therapeutic potential of marijuana and its chemical compounds has been slow and inconsistent. Other countries, though, have been less reluctant to investigate, giving special attention to CBDs.
â€śWeâ€™ve had some nice success overseas,â€ť said Stuart Titus, the CEO of Medical Marijuana Inc., a San Diego-based corporation that now focuses exclusively on CBDs.
In Brazil and Mexico, one of Medical Marijuanaâ€™s CBD products has been approved as a treatment for refractory epilepsy.
â€śOur product seems to help these children,â€ť Titus said, â€śwhen the traditional treatments had not helped them.â€ť
In the U.S., the company cannot make any claims about its productsâ€™ medicinal value. But Titus notes that preliminary studies indicate that CBDs has potential to treat patients with a broad range of maladies: heart disease, arthritis, Parkinsonâ€™s disease, Alzheimerâ€™s disease.
Youngsters afflicted with epilepsy often have sleep and appetite issues.
â€śFor many of these children, CBD also helps with these peripheral maladies,â€ť Titus said.â€śWe really believe there is a tremendous amount of research still to be done. Weâ€™re very excited about the future.â€ť
Investors appear to share this excitement. The publicly traded company reported revenues of $26 million last year; for the first six months of 2018, Titus said, sales had topped $39 million.
Researchers have long known that chronic use of marijuana can inhibit adolescent brain development. Should doctors be wary of prescribing pot extracts containing CBD or other cannabinoids to even younger patients?
â€śOf course I have a concern about that,â€ť said UC San Diegoâ€™s Dr. Grant, â€śas I would about prescribing anything to a child. Letâ€™s do the science and do it in as responsible and safe a way as we can.â€ť
For the universityâ€™s autism study, the 30 children will receive CBD. To understand the mechanisms of any CBD benefit, tissue samples taken from the children will be reprogrammed as brain cells. CBD will be administered to these cells, and researchers will examine how they respond.
â€śThere is just anecdotal evidence out there,â€ť Grant said. â€śParents have been giving children with autism CBD and some of them find that this actually helps the symptoms of autism in a child.
â€śBut nobody has done a really proper clinical trial to see if that is so. That is our objective â€” to give it a proper clinical trial.â€ť
The upcoming study is the talk of San Diegoâ€™s tight-knit group of families dealing with autism.
â€śItâ€™s definitely something that the autism community is very excited about,â€ť said Amy Munera, president of the Autism Society San Diego. â€śItâ€™s exciting to see that there is so much robust research, and itâ€™s great that they are doing it here locally.â€ť
Itâ€™s encouraging that the Higueras and others have used CBDs to control seizures, Munera said, because many people on the autistic spectrum suffer from epilepsy.
â€śWhen your child is having seizures and you are trying meds and they are not working,â€ť Munera said, â€śif there is something that will stop your childâ€™s seizures, you are going to want to try it.â€ť
Yet families eager to use CBDs to help their children may encounter numerous hurdles. Brian Higuera recalled calling doctors to obtain a medical marijuana card for his infant.
â€śItâ€™s for an eight-and-a-half-month-old baby,â€ť he would say.
The two most common responses he heard:
1. â€śIâ€™m sorry, but I canâ€™t do that.â€ť
2. â€śAre you kidding?â€ť
Finally, he found a doctor willing to give the Higueras a medical marijuana card â€” for 30 days, not the usual one year.
The Higueras then tracked down a pharmacy that stocks CBD in a hemp oil with trace amounts of THC.
Sadie takes all nourishment and fluids through a gastrostomy tube installed near her naval. Her father prepared a solution, then slipped it into the g-tube.
â€śAbout 10 minutes later, her arms stopped twitching â€” and then she started focusing on me,â€ť Brian Higuera said. â€śI wondered: could this actually be happening or am I just wanting it to work?â€ť
When Damaris Higuera came home, she rushed to her babyâ€™s side.
â€śSadie,â€ť she said, â€śhow are you?â€ť
Then the baby did something unusual: she looked directly at her mother.
â€śWe got our baby back!â€ť Damaris said, crying. â€śWe got our baby back!â€ť
Sadieâ€™s first nine months exhausted everyone in the Higuera household. The entire family â€” Brian, Damaris and their two other daughters, Dina, who is now 8, and Sophia, now 6 â€” spent numerous days and nights in hospital waiting rooms.
Sadieâ€™s grand mal seizures were tense episodes, leaving family members in tears. When surgeons removed a tumor from the base of Sadieâ€™s spine, her survival was in doubt. The baby was hospitalized up to three weeks a month.
While the CBDs eliminated Sadieâ€™s seizures, she still copes with a variety of congenital disorders. And the familyâ€™s finances were being stretched to the limit.
The Higueras add a drop of cannabis oil to the CBD-laden hemp oil, as some studies indicate that CBD works best in combination with cannabis. Neither substance is cheap. Higuera, who had received an inheritance from his father, spent $50,000 to $60,000 a year on these fluids.
When Hemp Meds, a subsidiary of Medical Marijuana, learned of the Higueraâ€™s story, the company established a foundation to pay for Sadieâ€™s hemp oil.
Mankind Cooperative, the Miramar dispensary where the Higueras buy Sadieâ€™s cannabis oil, sell it to the family at cost.
â€śThe cannabis industry are some of the most caring people Iâ€™ve met,â€ť Brian Higuera said.
No one cares more for Sadie than her older sisters, who bring her toys and talk to her constantly, stimulating her injured brain.
â€śYou know, papa,â€ť Dina recently said to her father, â€śIâ€™m really grateful that Sadie is still alive. Now I get to play with her.â€ť
For the Higueras, the past year has been especially happy. Sadie spent all 12 months at home, without a single trip to the hospital.