My Daughter’s Birth Exposed the Medical Community’s Anti-Drug Stigma

    In January, a few weeks after my 49th birthday, my partner, Carolyn, gave me a most unexpected gift. She emerged one day from the bathroom with an immunoassay test cartridge, which immediately made me think of the fentanyl test strips I had spent two years dipping into bags of street heroin and cocaine. But the test strip Carolyn held in her hand would be the first time I celebrated a positive. She was pregnant, the lines on the paper told us.

    As we embraced in celebration, it never dawned on us that we, like so many others, were about to enter the most harrowing year of our livesmarred by the COVID-19 pandemic and the hardships of lockdown, and by the arrival of National Guard troops, armed with automatic rifles, onto the streets of Kensington, North Philadelphia, following protests and brutality after the killing of George Floyd.

    Amid all this, Carolyn stayed home, while my work required me to keep venturing out into the field, to report on these situations and complete the filming of a documentary I’m co-producing on Philly’s fight for safe consumption sites. So she spent too many days quarantined alone during her pregnancy, and experienced the anxiety so common in these times.

    Most of all, she was fearful she might contract the coronavirus from me. “Irresponsible” was a word that came up a lota hard one for anyone with a pregnant partner to stomach, and all the more stinging to a former chaotic heroin-user like me. But we compromised, worked things out and remained there for each other. We got through it.

    And on August 26, Carolyn gave birth to a beautiful girl we named Olivia-Rose, Carolyn’s third child and my first.

    In the weeks after Olivia’s birth, Carolyn and I would learn what it feels like to be thrust under the microscope of suspicion around supposed drug exposure.

    Olivia arrived through an emergency C-section triggered by Carolyn’s preeclampsia, a prenatal condition involving dangerously high blood pressure. Despite that difficult circumstance, the event should have brought nothing but joy—and joy was, and remains, our overwhelming emotion.

    But in the weeks after Olivia’s birth, Carolyn and I would learn what it feels like to be thrust under the microscope of suspicion around supposed drug exposure. It culminated in an unannounced visit by two investigators from the Department of Human Services (DHS), who scrutinized our growing assembly of baby-related goods and questioned me about my decades-old arrests, within earshot of Carolyn’s parents.

    But I’m getting ahead of myself.

     

    Carolyn’s Kratom Use

    Carolyn, who has no history of substance use disorder, suffers from a chronic illness known as Ehlers-Danlos syndrome (EDS)—a painful condition of the ligaments and joints that causes periodic subluxations (partial dislocations). During especially bad flare-ups, this can keep her bedridden for several days.

    Few people are familiar with EDS—and for years, Carolyn was misdiagnosed with fibromyalgia, which falls under the rubric of a rheumatological disorder. Some doctors continue to deny that fibromyalgia even exists. And even those who don’t are reluctant to treat it, because it typically involves prescribing opioids.

    EDS, with which Carolyn was finally diagnosed, is characterized by at least some objectively measurable hallmarks, such as hyper-flexibility, skin that bruises easily and digestive issues. However a verified diagnosis requires expensive generic testing, which is not covered by most insurers.

    When I first met Carolyn about six years ago, she was frequently in pain. In 2017, when she finally got a long-awaited referral to a pain management clinic (and had waited another three months for her appointment), the physician told her she was “too young” to be on pain management. She was 36 at the time, a fact evident on her intake forms.

    It didn’t prepare me for the abject hopelessness of my own loved one being “too much trouble” to have her basic medical needs met.

    I offered to go back to the doctor with her and demand an explanation, or at least a refund of her co-pay, but like so many downtrodden pain patients, Carolyn was resigned to the decision. “The more you ask for what you need, the more it looks like you’re drug-seeking,” she said.

    Like almost anyone suffering from one of the so-called “invisible diseases,” Carolyn has endured stigma and mistrust, particularly from within the medical community. Even sympathetic doctors have been reluctant to prescribe the medication she needs during flare-ups.

    Years of covering the impact of opioid policy on the chronic pain community didn’t prepare me for the abject hopelessness of my own loved one being “too much trouble” to have her basic medical needs met.

    When Carolyn acquired some Vicodin from a friend during one particularly bad flare-up, I  tested the pills she bought. They were negative for fentanyl. But that’s when I asked her if she’d ever heard of kratom.

    Kratom, derived from a shrub grown in Southeast Asia, has mild-to-moderate painkilling properties and has been the subject of controversy in recent years. During the last year of the Obama administration, the Drug Enforcement Administration announced its intention to schedule it. Faced with widespread backlash from the pain community, the DEA balked and punted the issue to the Food and Drug Administration, which in 2018 classified kratom as an opioid. The move has left those who depend on kratom, especially former opioid patients, in a state of fear as the legal status of the supplement remains in jeopardy.

    For Carolyn, it’s been a game-changer. It’s enough to keep her pain under control.

    Kratom is already illegal in at least five states, and active-duty military personnel are prohibited from using it. But in Pennsylvania the supplement is sold openly and legally in many herb and smoke shops.

    Although many people say that kratom has helped them to quit or replace conventional opioids, the FDA has cracked down against marketing it for that purpose. For what it’s worth, several people I know who use heroin and fentanyl have not found kratom to be helpful in this way.

    But for Carolyn, it’s been a game-changer. She buys kratom in bulk from a reputable supplier, and drinks it mixed with hot chocolateabout three or four mugs a day. The mechanisms involved may be under-researched, but it’s enough to keep her pain under control. I have never seen her exhibit any signs of opioid intoxication. Indeed, she would no longer use Vicodin or other pharmaceuticals now that she has kratom.

    Carolyn’s kratom

    Yet the active compound in kratom—mitragynine—does stimulate the opioid receptors, meaning it can cause physical dependency. And although Carolyn insists she has never experienced kratom withdrawal, we discussed the pros and cons of her staying on it through pregnancy.

    As my Narcotica podcast co-host Troy Farah reported for Filter in late 2018, there is a dearth of research on the effect of taking kratom during pregnancy. But at the time, the scientific literature held only seven cases of infants born of kratom-using women in North America exhibiting signs of opioid withdrawal.

    Faced with such dilemmas, physicians generally consider whether the potential harms of taking a medication outweigh the benefits. Given that Carolyn was placed on oral Dilaudid during the final weeks of her previous two pregnancies, due to intense pelvic pain caused by her EDS, it seemed sensible that she should continue to use kratom.

     

    Olivia’s Birth and the Finger of Suspicion

    Olivia’s entrance into the world at Pennsylvania Hospital in downtown Philly happened so fast that I could barely process what was happening. With Carolyn’s blood pressure rising and Olivia’s heart rate dropping, Carolyn was abruptly wheeled into an operating room. I was left standing in the hallway. “Just wait here,” a nurse told me.

    Twenty minutes later, I was presented with my daughter and a small bottle of formula to begin feeding her. We had been in the hospital just over an hour. I held Olivia for 40 minutes before Carolyn joined me, floating in and out of consciousness as her anesthetic wore off.

    That’s when a nurse noticed that Olivia was having trouble keeping her formula down, and expressed mild concern over her gag reflex. Still, she acknowledged that babies born of C-sections frequently hold fluid in their lungs that would otherwise be expressed during a vaginal birth.

    And that’s when I made a decision that I will likely forever question: I mentioned Carolyn’s kratom use.

    A little while later, a nurse entered and asked Carolyn’s consent for a drug test.

    Unsurprisingly, the nurse had never heard of it. Then came the pediatrician on call. She had never heard of it, either. “I don’t think this has anything to do with the kratom,” she told me.

    A little while later, a nurse entered and asked Carolyn’s consent for a drug test. She was in no condition to give consent, and I emphasized to her that she was not obligated to do so. But a technician proceeded to draw several tubes of blood. Carolyn does not remember any of it.

    Her test came back negative for opioids, and positive for THC (which does not pass the placental wall, meaning Olivia’s own test was negative). There were also traces of the Adderall Carolyn which takes for ADHD, but had largely cut out during her pregnancy.

    A hospital social worker later admitted that Carolyn’s negative opioid test was met with some dismay.

    “We thought for sure there would be something there,” the social worker told us, hinting that doctors believed I mentioned kratom in order to cover for some other opioid use.

    Carolyn was transferred to a private room and Olivia to the neonatal intensive care unit (NICU). We were told that due to COVID-19, the general nursery had been closed, and only one parent could visit the NICU at a time. For the next two days, I visited Olivia, marveling over her tiny fingers and huge dark eyes. She slept in my arms and did exactly what I had been told babies should do after they are born: eat, sleep, poop and cry.

    The subject of kratom didn’t come up again.

    The staff had put our daughter on morphine, without consulting us, and with no presence of any opioid in her system.

    Olivia had been born on a Wednesday. By Friday, Carolyn was able to make it to the NICU to begin nursing her.

    On Saturday, we learned from a nurse that the staff had put our daughter on morphine, without consulting us, and with no presence of any opioid in her system.

    In case you missed that: Doctors at a major city hospital introduced morphine to a newborn baby with no opioid previously present.

    For the next two weeks we stood by helplessly, watching as a team of doctors struggled to explain a decision they were clearly beginning to question. One rotating pediatrician would decrease the frequency of Olivia’s dosing, only for the next to increase it. Before long, even hospital staff had to acknowledge that our baby was becoming dependent on morphine.

    Carolyn was also told to continue her kratom use on the off-chance that whatever small amount made it through into her breast milk would help ease Olivia’s withdrawal from morphine.

    My call to one of the pediatricians who treated Olivia to request comment was directed to the main pediatrics line, and no comment had been received by publication time.

    Babies can’t tell you how they feel, so pediatricians rely on a metric called the Finnegan Scale to determine levels of neonatal abstinence syndrome (NAS). The scale includes 21 metrics, such as sweating, poor feeding and crying up to five minutes without consoling—and many of them are highly subjective. According to one assessment, the scale is “a complex and complicated tool for routine use in many nurseries,” and the “reliability and validity of the Finnegan Scale is not well established.”

     

    An Unsatisfying Outcome

    While Carolyn and I were open to the possibility that some mild NAS might have resulted from her kratom use, we were not prepared for the uninformed assumptions, nor for the total lack of medical knowledge about the subject. Not one of our daughter’s caregivers had so much as heard of kratom. I could practically hear the clicking of computer mice throughout the hospital as doctors, nurses and social workers struggled to learn what it was.

    By Day Ten we were exploring both a transfer to another hospital, and the idea of taking Olivia home against medical advice. But by then, a social worker who had previously told us she conferred with supervisors and saw no legal obligation to file a report with the state Department of Human Serviceswhich includes child protective servicescalled them anyway.

    When we confronted her about this decision, she explained she was in fact obligated to call after allnot because of the NAS, but due to the presence of THC in Carolyn’s system. Despite the fact that it was not present in Olivia’s.

    The investigators peppered us with questions about drug use and our criminal records.

    Investigators of child neglect arrived swiftly and unannounced. One afternoon during our ordeal, I was leaving Carolyn’s parents, who live near the hospital and have been helping with her care, when I got a call from an unknown number. It was the DHS. They were a block away and asked if we could meet.

    Moments later, they arrived at the posh apartment where Carolyn’s parents live. It was satisfying to inform them they would have to get approval from the concierge before entering.

    Inside, the investigators peppered us with questions about drug use and our criminal records. In my case, that meant describing past misdemeanor arrests, the last of which was in 2003. These questions perturbed me, in part because all that information could easily be found in a public docket search.

    After Carolyn’s mom proudly showed off all the baby gear that had been accumulating (the function of some of which I still don’t understand), the agents left. They would be in touch, they said.

    The hospital went on to inform us that Olivia would not be released without their stamp of approval.

    But after 15 days, with Carolyn spending entire nights in the NICU so she could be there to nurse, the hospital was beginning to come to terms with the possibility that they made a mistake.

    By then, they had dropped Olivia down to the lowest dose of morphine possible, once every 12 hours (which, given the rapid half-life of the drug, makes no sense). Another doctor proposed further reducing the dose, to once every 24 hours. This sparked a backlash from nursing staff, who explained that reintroducing morphine after 24 hours of abstinence was counterproductive and to their knowledge, not even practiced.

    I am left to wonder if the risk of a lawsuit was playing on staff’s minds at this point, as they sought to prevent further disruption to the beginning of Olivia’s life.

    Finally, after 19 days in the NICU and 48 hours off of morphine, the hospital signed off on Olivia’s release.

    Carolyn and I got to see our daughter together for the first time as we left the hospital.

    Adding insult to injury, the hospital social worker missed a DHS call confirming permission for this. We waited three extra hours before I personally called the agency investigator.

    “I left her a message, didn’t she tell you?” the DHS worker said.

    Carolyn and I got to see our daughter together for the first time as we left the hospital. As we embraced, one doctor with whom we’d developed a good relationship approached, asking if she could use our case for a paper about kratom and NAS.

    “Absolutely,” we said, and she and Carolyn arranged a time for an interview.

    We received no apology or explanation for what happened to us. But with more people taking kratom amid anti-opioid fervor and a world that criminalizes drug use during pregnancy, if our experience can be used to prevent something like this from happening to others, we’ll have to take that.

     


     

    Photographs by Christopher Moraff

    • Christopher Moraff

      DISPATCHES is Christopher Moraff’s weekly column for Filter, featuring analysis and beat reporting. Christopher has spent over a decade reporting on the intersection of policing, criminal justice and civil liberties. His immersion reporting from Kensington, Philadelphia, has earned him a reputation as an expert on injection drug culture and the fentanyl crisis. His work has appeared in publications including the Daily Beast, the Washington Post and Al Jazeera America. He is co-host of the podcast Narcotica, and curator of the stock photo site StashHouse.org.

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