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A roller coaster ride … questions but no answers

Minu Sikand from Ontario, Canada, is a woman with a spinal cord injury. Here she shares her experience of post-natal depression after becoming a mother.

I am a woman who is known for being spontaneous in life. To become a mother was a decision that I didn’t make spontaneously. Ever since I was a young woman I wanted to be mother. I have an extraordinary mother and I was determined to follow in her footsteps. Being aware of my physical limitations, due to a spinal cord injury (SCI) that resulted in paraplegia at T5-T7 level, I wanted to prepare myself financially, emotionally and physically before I had a child of my own. I wanted to be a responsible parent not an accidental one.

Finally, I was 35 years old when I considered myself to be ready. My strong network of family, friends and other resources was ready to support me during and after the pregnancy. So here I was … Pregnant. My body experienced changes and I started to have many questions on my mind that my doctors were unable or unwilling to answer. While answering they used phrases such as “For a normal woman the experience will be...”, or “Under normal circumstances the delivery plan will be...”. I started to feel very agitated and hated the word ‘normal’. I simply wanted to know about the care I would need or delivery plan my doctor would follow. I wanted answers specific to my situation not to some hypothetical scenario. I planned for 35 years to become a mother and here I was at the mercy of medical professionals who couldn’t help me in planning for the next nine months. They had no answers for an expectant mother who happened to have a disability.

Many times I was asked to contact my rehab doctor to investigate my care even though I was not considering any rehabilitation at this time. My stress level continued to rise as I started to ask more specific questions and got inadequate answers. I didn’t have access to proper equipment or services like other expectant mothers during my regular check ups at the hospital. As I started to gain weight it became impossible for me to fit in my chair, to push my wheelchair, or to transfer to the examination table or even to drive to the hospital. No one had any recommendations for any alternatives. I was experiencing all day long morning sickness, frequent migraines, bladder infections and severe back pain and was very worried about taking antibiotics and other medication, as there wasn’t any data available from the local health department about its risks. No one has done any research on the risks of medication for women with SCI. Once again No Answers. My anxiety level started to build up.

Seeking support

I started to look into the local parenting with disability network to seek advice or peer support. I contacted the local Independent Living Centre to network with other mothers with spinal cord injury. To my surprise no one with SCI was a member of the group. By this time I was feeling extremely lonely and vulnerable.

The information developed by parenting network concentrated more on addressing the physical needs of parenting with a disability. These needs are very real and extremely important, however no one can deny the emotional needs. There is a lack of resources to support these needs. Even though I knew many women with whom I could talk about their experiences, they didn’t have any special needs, so didn’t experience the barriers that I was facing. I was waiting to connect with other women with SCI and for them to share their experiences with me. I was able to receive information about adaptive equipment and a program through which I could secure funding to hire Nurturing Assistance, to assist me with the tasks that I wouldn’t be able to perform for my baby due to my disability. It was great. However I still didn’t know whether I would be able feel the labour pain and reach hospital in time for the delivery? Would I be able to tell if something was wrong and my baby had stopped moving suddenly? Would I be able to carry my baby to full term? No one could answer, as I wasn’t a ‘normal case’. I continued to lose sleep because of the unknown.

I was so thrilled to be pregnant, but at the same time I was reaching the lowest point of my life. I was worried about losing the baby due to transfers or giving birth to a premature baby because I was sitting all day and the baby had no room to grow properly. During the last two months of my pregnancy, I was confined to my bed. There had been so many questions in my mind with no answers either from the medical professionals or my peers from the parenting with disability network. I started to doubt that I would be able to cope emotionally with the arrival of my baby. I was too ashamed to admit this to anyone because I thought I had planned well and was ready, able and willing to have this child.

I survived this emotional roller coaster and was blessed with a beautiful son, Manav, at the end of 36 weeks on May 22nd. My 12 days stay in the hospital was not a joyful experience as I continued to feel
discriminated against, due to my disability. Staff were unprepared to handle a new mother with mobility limitations after a Caesarean section. Their special treatment left me extremely angry and I wanted to go home as soon as possible. My family was asked to stay with me for ten days in the hospital, as there were no extra staff to meet my special needs. They asked my husband to assist me with transfers because staff didn’t have enough experience. My mother had to help me with the baby, as I could not walk to the nursery. The worst thing of all was that they used a surgical tape that I was allergic to. This caused blisters on my lower body.

I arrived home, with a newborn baby, totally confined to bed due to the blisters caused by the tape and a messy home as we had been in the hospital for the past 12 days. I had planned in advance for the assistant who would help me with my son and my daily tasks, but that was insufficient due to the extra help I now required because of the allergic reaction. By this time, I had already been confined to my room for the past three months and was becoming an emotional wreck. I was not prepared for the fact that I wouldn’t even be able to hold or comfort my newborn baby. I could barely breast-feed him. I needed a nursing assistant every day to look after the blisters for the next ten weeks.

The strain takes its toll

When I started to sit in the bed and move around in my wheelchair, I realized that I was a completely changed woman. I had difficulty in coordinating my time to do anything for Manav. Most days I stayed in my nightgown and hardly did anything for myself, except brushing my teeth. I was forgetful, emotionally wrecked and cried about everything. My family was afraid to upset me about anything. Most of the time, I was withdrawn from people around me. During those days, the only time I was happy was when I was singing to Manav. He loved my singing and it created a special bond between us because no one except mc was able to calm him with a song.

I had all the symptoms of depression and no help to deal with it. The home care nurse did not recognize these symptoms and in Canada there aren’t any home care psychiatrists who make home visits. Once recognized by my physician, taking an anti-depressant wasn’t a safe option, because I was breast-feeding. Another four months passed by while I struggled to manage my depression without making it public. I started to feel better, slowly, once I started to drive again. I also started to visit a psychiatrist on weekly basis. When the winter arrived, I once again noticed a drastic change in my mood and couldn’t cope with my parenting tasks any longer. I was feeling extremely powerless because I couldn’t manage my emotions and feeling extremely useless, embarrassed and a total failure. It started to affect my relationship with my family, friends and my son.

Back in control

On January 13th it was Manav’s first Lohri, which is an extremely important day in East Indian culture for a newborn boy. It was the day I suddenly realized that I couldn’t even enjoy this most important day because of an illness, which could be managed if I chose. It was the day that I made the brave decision to stop breast-feeding and start my anti-depressant. The welfare of my son was tied to my emotional well-being. As a responsible parent, my duty was to take care of myself so I that I could look after him adequately. Even if that meant that I needed to stay on the anti-depressant for the rest of my life. I was ready to do it for my son and for my family who had been so supportive of me during all this time. I started to see an improvement in the next three to four weeks. By April 2002 I was the same woman again, who enjoyed life to the full. I also decided to be vocal about my experience and agreed to speak at the second international conference in Berkeley, California. My intentions were to share my experience with other would-be mothers and professionals as well as organizations which provide services to disabled people, hoping they would talk about the symptoms of post-partum depression and develop resources/strategies to help new mothers to deal with it. Most people with disabilities are extremely vulnerable to isolation, which often leads to depression. Traditional medical services do not accommodate the special needs of women with disabilities. This raises the anxiety level of expectant mothers to a dangerous level and later increased responsibility could trigger post-partum depression easily. It is extremely important to recognize and treat this as a barrier that a woman with a disability could experience.

Since the conference, I have seen some reports published about the findings. Unfortunately, all the reports or articles that I have seen have chosen to ignore this very disabling and real illness that could compromise anyone’s parenting ability.

On personal note, I am off the medication now and am enjoying being a mother of very happy and active boy. And as a responsible parent, for the rest of my life I will always be monitoring the symptoms of depression.

First published in Disability, Pregnancy & Parenthood international, Issue 40, October 2002.

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