When I was 15 I began having issues with my mental health that forced me and my entire family to relocate from Italy to central Massachusetts before my senior year of high school. After 2.5 years of tests and exams, doctors and hospital visits, I was diagnosed with bipolar disorder. My disease grew to encompass both my mental and physical state and by my freshman year in college I was hospitalized three times with a non-epileptic seizure disorder. I have been balancing this disease with a combination of pharmaceuticals and cannabis for the past 12 years. I will be 31 in January.
Soon after I moved to the Boston area for college I decided I would keep my medical needs in the Brigham and Women’s system. My primary care physician, women’s health needs, dermatologist, and neurologist have all been with the Brigham for nearly 10 years. It is where I have gone for all seizure episodes and where I would plan to go for any future medical needs.
My husband and I have been married for almost eight years and in the summer of 2015 we decided to start a family. The first step was to make an appointment with my neurologist to discuss my medications, he informed me that the medication I had found success with was extremely dangerous to a pregnancy and it would need to be out of my system before we began trying. He suggested going off all medications first to see how I would fair pharma-free while I was pregnant. Within one week of being pharma-free I did have a seizure. We took several months transitioning me onto a new medication. The pregnancy safe option was not nearly as successful as other medications and I would need to supplement with cannabis. I was already a registered medical marijuana patient in Massachusetts and with the support of my neurologist I retained my patient status.
My husband and I were fortunate enough to get pregnant in January of 2016. At week six of the pregnancy I had the worst seizure episode of my life, it lasted four days. My body continued to move and convulse nonstop throughout those days, I was very scared that this was only the beginning of what would be a terrible pregnancy, and that I may not be able to carry a child full term. We kept it quiet through the first trimester, but after we were in the clear we told everyone. We asked not to know the gender, that we would be having a gender reveal party and that we also wanted to be surprised.
Early on in my very regular hospital visits with my OB Dr. Nicole Smith I was informed that I would have to meet with a hospital social worker about my cannabis use so they could better explain what the hospital’s policy is. My cannabis use was going to be a major topic of discussion throughout the pregnancy. Dr. Smith was never judgmental of my choice, and seemed genuinely perturbed by the fact I would have to meet with the hospital social worker. Dr. Smith did her own research about cannabis through pregnancy and would regularly tell me what new thing she had learned.
Throughout the past nine months I have had more tics and tremors than normal. I have been able to keep most of those seizures at bay, though there have been a few severe episodes. There have been several episodes of debilitating mood swings. I have lost all self-control and committed acts of self harm, experienced countless manic sleepless nights, uncontrollable mood swings. It has not been easy for me to be pregnant. Thankfully I was able to turn to cannabis instead of Valium, Xanax or sleep aids. At nearly every appointment my cannabis use came up, I kept her up-to-date on how I was using, and how I was feeling.
On the day I was meant to meet with the social worker in the office I had another episode, and I was shaking uncontrollably by the time I was in the office. Unfortunately my husband, who is a consultant and travels every week, was unable to come with me. By the time I was meeting with the social worker I was sitting on my hands to keep my arm from shaking. One of my nurses was kind enough to sit with me through the meeting. The social worker explained that the hospital would test the baby for cannabinoids after he was born. It would be a meconium test that would show what has been in the baby’s system for the past four months.
I was within my third trimester by then and stopping my cannabis use at that point wouldn’t make any difference. They would monitor the baby for signs of withdrawal and that form 51A would be submitted to the Department of Children and Families informing them that I was using a controlled substance during pregnancy. I did explain that I was a medical marijuana patient, that I had been purchasing from a dispensary and that what and how I was using was completely within the state law. I also explained my disease. She told me this was hospital policy and that when they reported me to DCF I would then have at least one phone interview and one home visit.
After she left the office I broke down into tears terrified they would try to take my baby. I felt guilty, I felt alone, and I felt like I must have been doing the wrong thing. Why would they do that? Why would they need to tell the DCF that I was using cannabis under the recommendation from a doctor and under the watchful eye of two more.
The next meeting was with the Neonatal Intensive Care Unit, they wanted to meet with me so they could explain what was going to happen with the baby if there were any concerns about withdrawal or other serious issues that could arise. The woman that I met with was obviously biased about cannabis use during pregnancy and her general tone was judgmental. I left that meeting feeling even less comfortable with the hospital that I had been going through for nearly 10 years.
After another standard appointment with Dr. Smith, she invited Michael Prendergast, MD, NICU Associate Medical Director. He was brought in to explain to me that they would be following the DCF policy. He explained that the policy was to run this test and because we know what the results would be, that they would then be filed with DCF, and he would follow this policy.
I explained that I had rights as a patient I wanted to refuse this form or test. It was clear to me that this was not going to be an option for me as I was being bullied by the hospital. My husband and I informed them that we would be traveling to Maine to deliver as they do not have these policies and we believed our family would be safer in Maine than in Massachusetts, at least safer than at the Brigham. Dr. Smith asked us to call Patient Relations and speak with the hospital lawyer. I left a message for their office and waited.
That week I called a hospital in Maine and made an appointment to meet their doctors because I was going to change delivery locations. I also heard back from patient relations twice calling to get more details about what the problem was. I had a final appointment with my doctor last Friday, when she walked into the office with a huge smile she asks “Aren’t you happy today?!” My husband and I, both a bit confused, asked her why we should be happy, and she was shocked that I hadn’t gotten a call back from patient relations.
She went on to explain that the hospital had reconsidered my situation and would not be filing the test results with DCF and that because of my persistence with DCF they were arranging meetings with the heads of departments to make a permanent policy change at Brigham and Women’s for medical marijuana and obstetrics patients.
This proves that when we are patient, forceful, and demanding of our rights we can make important changes to a broken system and force hands to protect patients. I want to thank Dr. Smith and Joshua Abrams who had my back and believed that I was making the best decision for my pregnancy and my family. Abrams is a patient care, labor, employment, and litigation attorney in the Office of General Counsel at Partners HealthCare System, Inc. He represents Massachusetts General Hospital, Brigham and Women’s Hospital, Newton Wellesley Hospital, North Shore Medical Center, and all other Partners health-care entities in proceedings before the Massachusetts Commission Against Discrimination. I can only hope that he is able to implement change at all the other hospitals he works for and within the Partners Healthcare System.
The support I have received from my fellow activists, friends and family who believed in me has been crucial to this victory for the rights of all expecting mothers. Thank you to this community for standing by me and my family and I can’t wait for you to all meet baby Dash! I am looking forward to a safe and healthy labor at the Brigham and Women’s in Boston Massachusetts.