Dignity in Care: Pregnancy with Sickle Cell Disease
For women living with sickle cell disease, pregnancy and childbirth are fraught with more risks than usual. Compassionate care extends beyond just medical checkups, and provides real support.
Jyoti (name changed) is a 30 years old woman living in the tribal region of Jashpur, Chhattisgarh. She came to the OPD clinic last year because of severe pain in various joints in her body. Seeing her old medical reports, we realised she had sickle cell disease.
When we asked Jyoti about her history, she only mentioned having joint pains multiple times in the past. She knew she had some disease which caused this, but didn’t know any other details. None of the doctors she saw in the past had ever prescribed her hydroxyurea, a medicine which is the mainstay of treatment for Sickle Cell Disease.
We started her on hydroxyurea on this visit and also counselled her about her disease. Our team followed up with her every month, and we were overjoyed when over the next three months she got relief from her pain crises.
Then, four months later, she returned with heartbreaking news — she had been four months pregnant, but she had lost her baby. She was deeply upset, because this was her third miscarriage. Our team sat with her, listened, and tried to comfort her, knowing how heavy this loss was for her.
We explained to Jyoti and her husband that women with sickle cell disease have an 18% to 28 % higher risk of miscarriage.
Just a month later, her life took another painful turn — she began facing emotional, physical, and even sexual violence from her husband, and pressure from her in-laws to try again for a child. When the stress became unbearable, she left for her maternal home.
She continued coming to the nearby health centre for her follow-ups by herself. Our team called her every month, reminding her to take her medicines and checking on her well-being. We knew she needed not just medical care, but also emotional support. We reached out to her husband, gently counselling him, helping him understand her mental health struggles, and urging him to stand by her.
After four months, Jyoti and her husband walked into the CHC together for her regular check-up, a small but meaningful sign that things might be improving.
Sickle Cell Disease, Pregancy and Mental Health
Chhattisgarh is one of the states most affected by sickle cell disease (SCD), a major health concern in India. SCD is an inherited blood condition. This disorder causes abnormal hemoglobin to be produced, which results in red blood cells with an irregular shape. These cells degrade too quickly, living only 10 to 20 days in comparison to the normal 120, which results in severe anemia and other issues.
Sickle cell anaemia is a disease that a person is born with, passed down from their parents. Red blood cells, which normally look round and soft, become hard and curved, shaped like a crescent moon or a banana. These sickle-shaped cells don’t move smoothly through the blood vessels and can block the flow, causing pain, swelling, and damage to organs. People with this condition often feel weak, get tired easily, and may fall sick more often. It mostly affects people from certain tribal and ethnic communities.
Women who have sickle cell trait (SCT) or sickle cell disease (SCD) frequently deal with particular reproductive challenges that can have major impacts on their mental health. The risk of passing the disease to their offspring, coupled with the potential complications during pregnancy, can lead to heightened anxiety and stress. This constant worry about their health and their child’s health can contribute to chronic stress and mental health issues such as depression and anxiety during the post-partum period. A study conducted in the US found that maternal mortality rates for women with SCD were 26 times higher than the national average.
The physical symptoms of SCD, such as pain crises and fatigue, are aggravated during pregnancy and can interfere with daily life and contribute to feelings of helplessness and frustration. Pregnancy is also a time when women with SCD have to consider changing their pain management. These physical and emotional burdens can create a cycle of stress and mental health deterioration.
Our patient Jyoti faced intimate partner violence and pressure from family in laws. In India, intimate partner violence (IPV) during pregnancy is sadly not rare. Around the world, about 19% of pregnant women face emotional abuse, 9% face physical violence, and 6% face sexual violence. These numbers are even higher for women living with illnesses that carry stigma which makes others treat them as “less than” or undeserving of normal treatment.
Soniya’s Struggles – Life against All Odds
Soniya was admitted for an episode of pain crisis two weeks before her due date. Photo credit: Bikram Pramanik (Sangwari)
Soniya (name changed) was only 21 when we met her in her seventh month of pregnancy. She had been diagnosed with sickle cell disease. Her health reports were all normal, but she came to OPD alone and had a mild fever. She met the doctor, took medicines, and we told her to call us anytime if she felt unwell.
Just two weeks before her due date, she went into pain crisis. She said there was no one to care for her or give her emotional support. She admitted herself to the hospital, and we found out she was anemic. We asked her to call her family, but she said in a small voice , “No one is coming.”
When I called her husband, he said, “Sir, main Ranchi mein hu advance le chuka hun, shadi mein baaja bajaane ke liye, mein nhi aa sakta.” (I am in Ranchi; I took advance payment for a job playing in a wedding procession. I won't be able to come.) I explained, she needed A+ blood urgently, but he still couldn’t come. My team and I told Soniya this, and she tried calling her father. He said someone from the village could donate blood, but they asked for ₹5,000 per unit. We reassured her, and arranged two units of blood by donation.
Soniya was in pain, alone in the hospital, and called a neighbour to sit with her. In spite of everything, she delivered a healthy baby. She and her father were happy and kept thanking us, but we could see she was weak and needed her family’s care.
After delivery, doctors advised a blood transfusion. She stayed in the hospital for a week, but she kept telling us she wanted to go home. Her father had already gone back to work, and she assured us she could take care of herself. We spoke to the doctor, and he agreed to discharge her. The smile on her face as she left the hospital was the happiest we had seen her since she came in.
After delivery, we took updates of her follow up. She said she was getting consistent emotional support from her husband and family, and soon moved to Ranchi to her in-laws’ house.
Mental Health Care Coordination in the Community
Jyoti & Soniya experienced different challenges during their pregnancies, which affected them in many ways– chronic pain, fear of complications, stigma, financial hardship and a lack of social and family support. Recognising these difficulties and guaranteeing psychosocial well-being in addition to clinical therapy are necessary for integrating mental health into the system of care.
Counselling a person with sickle cell disease is a different challenge for health care workers. As I am working at the community level, I have realised patients are more comfortable confiding in us while hesitant in asking doctors. To this end, Sangwari has conducted special counsellor training sessions in different health facilities.
The Sangwari team helps bridge this gap by offering financial aid, counseling, and continuous support, ensuring that patients receive both medical and emotional care.
To increase awareness and build capacity for self-care, we conduct patient peer support group meetings and community meetings. This is a platform where patients can share their life struggles and discuss coping mechanisms. We also invite doctors and other healthcare workers to these meetings to understand the different context of challenges faced by patients outside clinical settings. In these meetings, my team and I also discuss various services available for patients in the government health system.
There should be systemic change in antenatal care, such as routine mental health screening for all pregnant women with SCD, training of frontline health workers to recognize psychological distress, access to counselling at all levels of health care centres, financial protection through government schemes, and true benefits from the sickle cell identity cards.
Families and communities also need to be sensitized, so that women are not isolated or subjected to violence because of their illness. Community meetings at the village level should be organized with family members to break the dilemma and discussion should be done to eliminate this disease.
Resilience and Healing Beyond Stigma
A 24 year old woman named Rupali (name changed) with sickle cell disease came to our OPD shortly after her second pregnancy. She found out she had SCD in her second pregnancy– she did not know about her diagnosis before that. She came to the hospital during an episode of pain crisis. For the past three months, she had missed her follow-up visits, so we tried reaching her by phone to talk about the disease, its complications, and the importance of care during and after pregnancy. She picked up the phone and answered, asking us not to visit her home, promising to instead come to the clinic in a few days.
Two weeks later, she visited the clinic with her husband. She told us there was stigma around this disease and asked us not to tell her in-laws. She worried about whether her child might have sickle cell disease or not. What stood out was how supportive her husband was. She shared her fears, anxieties, and hopes with him, and he listened with understanding.
This kind of open communication helped her cope with her anxieties about family planning, the risk of passing on the disease, and the uncertainty of her health. Their trust in each other was a quiet reminder that emotional support can be as important as medicine in the journey of living with sickle cell disease.
Rupali’s story sets an example of healing beyond the stigma; her husband played a crucial role by open communication and emotional support which she required during the pregnancy period and during the postpartum period. This shows us that sickle cell disease is not only a medical condition but also a social and emotional struggle deeply intertwined with stigma, gender inequality, poverty, and lack of awareness.
For women with sickle cell disease, survival is only part of the journey. The true challenge lies in ensuring compassionate and holistic care that recognizes their physical, emotional, and social struggles. Sickle cell disease is not only a biomedical condition but also a condition shaped by stigma, gender inequality, violence, poverty, and gaps in the health system. When health care extends beyond prescribing medicines to include counselling, family engagement, financial protection, and community awareness, it creates a safety net that women can rely on. Mental health support, partner involvement, and peer networks are not “extras,” but essential components of care.
Jyoti’s slow reconciliation, Soniya’s courage against all odds, and Rupali’s healing through her husband’s support show us what is possible when care goes beyond survival. Their lives remind us that women with sickle cell disease deserve not only to live, but to live with dignity, agency, and hope.
Edited by Christianez Ratna Kiruba and Radhikaa Sharma
