Life On Hold
Depression is something that I had experienced before. I had sat with this companion briefly at different times in my life — the menace of doubt creeping over my shoulder, smothering my visions, my hopes, clouding the horizon of future aspirations. Growing up with a physical disability the crippling fact of life is fear. For me the fear was that I would not be safe in the world — a world that upholds beauty and progress as success. Success that often means a “full and active” life measured in terms that may not define who I was as a person with a disability. Would I be able to support myself and to find someone to love that would love me in return? As I grew older I found a sense of disability identity that redefined my notion of who I was in the world. I was proud of the person I had become and knew success was what I had defined for myself. Yet, a fear lingered in the back of my mind would depression one day halt my life.
I had always wanted a child and when I finally got pregnant at the age of 35 I thought I had adequately armed myself for what I feared might be a battle to physically cope with the pregnancy and to deal with the challenges of adjusting to motherhood. To my shock it was those I loved the most who I had to help adjust to the new baby. I on the other hand, felt a sense of inner calm and bliss like I had never experienced before. The fear I had experienced during life transitions I didn’t experience this time. Instead, I knew my purpose and felt confidence and a sense of happiness and love like I never imagined. My world was whole, complete and I wanted to cherish every moment in peace. That’s not what happened.
As the ambulance doors opened and I was being wheeled inside a flood of memories and emotions zipped through my mind. I couldn’t believe how I had gotten to this point. Why wasn’t I on the couch in my pajamas with my baby and my husband next to me smiling? “ Good luck,” the driver said as he closed the ambulance doors. I took a deep breath knowing I would need to sound calm, and rational if I were ever going to get myself out of here. It was so hard, I was so scared and my chest already began to ache with the urge to feed my son. I wanted to scream and sob, give me my baby. I couldn’t, I knew it would only make things worse. As I was wheeled into the psychiatric hospital I noticed two sides. One side the patience in the lobby had visitors, roaming the area, easily able to walkout through the sliding doors into the warm breeze of the beautiful summer day. The other side, the side I was being wheeled into, on the ambulance gurney, had heavy metal and glass doors, the driver pressed a button to have me buzzed in. It was what I feared I was being checked into the locked ward. Health policy is my field so I was very aware I was being place on a forced psych hold. I knew I had some rights, but I was terrified. When would I get to go home? What would become of my son? What if they took him away from me?
Each state has laws on grounds for committing someone to a psychiatric institution against their will. In California it’s called a psychiatric hold or a 5150 for the section of the state law:
of the California Welfare and Institutions Code (specifically, the Lanterman–Petris–Short Act or “LPS”) which allows a qualified officer or clinician to involuntarily confine a person deemed to have a mental disorder that makes him or her a danger to self, a danger to others, and/or gravely disabled. A qualified officer, which includes any California peace officer, as well as any specifically designated county clinician, can request the confinement after signing a written declaration.
The doors slowly closed behind me. I was a new mom in jail. A friendly young woman greeted me and walked me into a small room and began the intake process.
“So do you know why you are here today,” the nurse asked.
“I was taken to the ER by a neighbor. They said the police had been called. My husband and the neighbor think I have post partum depression. I was in the ER the last 24 hours. Security was watching me sleep with the curtain open, I had to ask permission to use the toilet and to breast feed my baby. Please you have to believe me I am not depressed. My husband is. He has been acting strange ever since my son was born. He’s not sleeping, he’s angry. I think he is the one with post partum depression.” I said trying to explain what had happened simply and calmly as possible. Somehow if I was calm perhaps my explanation would somehow seem rational and I would be magically released and go home to my baby.
“Men can get depressed after a baby,” she said reassuringly.
“You believe me?!” I said hopefully as my voice trailed off.
“Yes, I do. Having a baby is difficult for both parents. Are you feeling anxious? Do you have trouble sleeping? Do you want to harm yourself or your child? Do you hear voices?” She began the required psych screener. It didn’t matter if she was placating me, or actually believed me, it was clear I wasn’t going anywhere for at least the next 72 hours.
With the swipe of the ER doctor’s pen I was committed. A breast-feeding mom, snatched from her child, who was now being cared for by a Doula – the birth coach my husband originally want me to hire, a women who I barely knew, in the presences of my husband, who I had no idea what he was feeling. Holding back my sorrow, anger and frustration, I calmly answered her questions.
“Do you know where your child is now.” She asked. “Yes, he is with the woman that was suppose to be my birth Doula and my husband at our house. I called the Doula when I was in the ER. They made me find a third party to take care of my son or social services said he would be placed in foster care. Please let me go home I only live a few blocks from here. Please I need to breastfeed, I’m in pain.” I calmly but urgently pleaded. “I can’t do that,” the nurse said with a slight giggle. “But let me see if we can find you a breast pump, I have to call over to the main part of the hospital. Be patient though it’s late, it may take tell the morning.” She said as she took notes.
My son at that point was eating every hour and a half. I was already feeling engorged. I could feel the pain and panic in every part of my body at the thought of having to wait another hour, let alone tell morning. Then it occurred to me, oh god what about my son, he couldn’t wait either! What if he didn’t accept a bottle? Could he die in the few days I was in here? He was only a few weeks old. What if he didn’t want to breast feed after I was released? I felt rage rise through my soul; they were putting my son’s health in danger and were robbing me of the most basic right as a mother. Breast milk was supposed to be the most beneficial and important during the first 6 months. If they were supposedly medical professionals why did they not understand this? If my child and I wanted to breastfeed how could they possibly separate us?
“Can I get you anything else to make you more comfortable?” She asked. “Yes, I’m starving I need to eat. I’m in pain, I had a c-section, I need Advil and Tylenol, I can’t tolerate pain medication. Speaking of medication…do I have to take any?”
I asked knowing that a 5150 meant possible medication and if I didn’t take it I would be seen as non-compliant and would possibly not be released within 72 hours. My stay could possibly be much longer; I wasn’t exactly sure how long they could hold me. But I knew if I took psychiatric medication for any significant length of time I would have to stop breastfeeding altogether. I knew one of the few “therapeutic” things they believed they could do for me, besides counseling, was to “stabilize me” and that required medication to monitor. This was anything but therapeutic and they were potentially dismantling a new family.
In fact as my neighbor drove me to the ER, instead of the police, I told her angrily. “Do you know what you just did? I am going to be placed on a psyche hold and my son is going to foster care.” I wanted to scream at her and jump out of the car. “Everything is going to be ok, you need help. Your depressed they will help you.” Trying to be as loving as possible she believed everything was going to be ok. She was a physician, she was following protocol, “do no harm.” I understood that she couldn’t sit back and do nothing, not when a child’s life was at stake. I tried to explain to her that I wasn’t depressed. Even though I had been crying and seemed scared. My husband was the one that was depressed. She didn’t believe me. She had talked to him and he showed no signs of the behavior I saw. He told everyone he could think of that I had post partum depression. I also confided in this same neighbor, so at that point it was a he said, she said, scenario. My neighbor told my husband to call a psychologist friend. The psychologists administered a screener, based on the answers my husband gave they flagged me as having post partum depression. The psychologist told my husband to call the hospital where I delivered my baby, the labor and delivery department following hospital protocol called the police. With one phrase, “post partum depression” without anyone trying other measures to help my family first, I was given a one-way trip, do not pass go, to the psych ward. A few phone calls, one over tired engineer husband, who didn’t understand what a woman goes through after she gives birth, resulted in me being place in essentially a plush jail. With no trial or jury, as easily as that, my newborn child, who depended on me, the food I gave him, was taken away.
Finishing the screener the woman handed me a brochure on my legal rights during a 5150 hold. She explained that in the morning the doctor would meet with me and decide if I would require medication and I did have a legal right to refuse but I was here for at least 72 hours. The longest 72 hours of my life.
“Now let’s get you some food. I can’t administer medication at this hour, so I can’t get you an Advil and I won’t be able to get you the breast pump tell tomorrow,” the intake woman said as she opened the door.
For the next few days I got to know the other patience, their stories, we all talked about strategies to “comply,” how we would follow protocol, so we could be released. It was a haunting experience and a glimpse into how broken our mental health system is. I was fortunate I was in a well run facility, which I am sure was therapeutic for some people. But it was clear it was not therapeutic for a new mother. If you are a mom and actually do have post partum depression the system is inadequately prepared to help you manage your depression and assist you in caring for your child. Despite the Brook Shield’s book and related media attention on post partum depression over the last few years, we are still a system that at it’s best fails women and at it’s worst, such as in my case, can actually cause greater harm than good. Our current mental health system does not have a place where moms and babies can be together. Any help you do need on an outpatient basis you have to drag your exhausted self to “support groups,” or counseling sessions. Who wants to leave the house after the first few weeks after the birth of a baby? If you do manage to leave the house I think you at least deserve and massage, or a pedicure. That by far would have been a more therapeutic counseling session.
While my story may be an extreme case, I am not alone. The myth of new motherhood takes many women by surprise and the strength required to navigate this new role can be truly the most difficult thing anyone will go through. The loneliness, fear and anger of why those around you simply don’t understand can make you feel hollow. It has forever changed me in ways that are both haunting and joyful. I hope my story will provide comfort to other women and guidance to a health and social welfare system that is inadequately prepared to deal with the needs of mothers, fathers and children in crisis.
Anne Cohen has a form of muscular dystrophy called Myasthenia Gravis. She first developed symptoms at the age of eight and had to navigate the complexities of the health care system for over 10 years before she was diagnosed. Her experiences in navigating the complexities of the health care system and identifying providers to deliver quality care has made her an advocate for people with disabilities. As a disability advocate she emphasizes working within the health care system in order to empower consumers to have a direct impact on the delivery of care. She became a mother in 2013 to an enchanting baby boy. Her joy for her son was over shadowed by her experience with navigating the health care system in ways she did not expect. Her dream is to create support services for new mothers so no one has to experience what she went through.
As a disability and health policy consultant she has over 15 years of experience in the disability field and has served in a variety of sectors promoting access to services for individuals with disabilities. She has served on several state and federal advisory committees that address disability issues including the Agency for Healthcare Research and Quality (AHRQ)’s technical panel for the development of health care quality measures for People with Mobility Impairments andas a subject matter expert on a variety of committees for the National Quality Forum (NQF). She founded Disability Health Access, LLC, in 2005, advising healthcare organizations on how to improve services for seniors and people with disabilities. In 2012, she collaborated with Harbage Consulting, a health policy consulting firm, with expertise in public programs and delivery system reform. The team advised the State of California on a three-year federally funded demonstration to promote coordinated health care delivery for seniors and people with disabilities who are dually eligible for Medicaid and Medicare. Before consulting, Ms. Cohen was a disability manager at Inland Empire Health Plan, a non-profit Medicaid Health Plan in Southern California. At IEHP, she developed disability-targeted community outreach strategies and coordinated service delivery enhancements. Prior to her position at IEHP served as a research fellow with the Rehabilitation Research and Training Center at Oregon Health Sciences University. Ms. Cohen was also a disability advocacy specialist for the Oregon Department of Health Services.
Ms. Cohen has a Master of Public Health degree in Health Policy and Administration, and a Bachelor of Science degree in Social Science from Portland State University, Portland, Oregon.
Disability Health Access