How Congenital Vision Loss Affects Motherhood

Editor’s Note: Not every woman grows up wanting to be a mother. For those living with a congenital eye disease, learning of a pregnancy can cause mixed emotions. The following story, based on an interview with a blind mother who has chosen to stay anonymous, depicts how genetic vision loss can dim the brightness of that maternity glow.

How Congenital Vision Loss Affects Motherhood

Our blind mom, who we’ll refer to as "M", was born in 1966 with cataracts on both her lenses, rendering them completely opaque. Her parents were told the ocular condition was either genetic or from a flu her mother had contracted quite possibly being passed to the baby in utero. "M" had a few low vision relatives within her family tree. However, in the late 1960s openly discussing these disabled relatives, even in family circles, was somewhat taboo.

Over the years, "M" had several operations, leaving one eye with the capacity to see colors and basic shapes. She grew up, got married, and started a new life with her husband. She had never wanted to become a mother. She enjoyed the freedom of her marriage and had no desire to assume the responsibility of children. Equally, she had no desire to bear what she viewed as the moral choice of willingly passing on blindness or low vision to someone in the next generation.

A Shocking Discovery

Three years into her marriage, "M" was shocked to discover she was pregnant. Though not thrilled with this revelation, she suddenly found herself instinctively protective of the tiny life growing inside her. Her husband feared the potential for the baby to be born with vision loss strongly enough that he asked her to have an abortion.

"M" refused to do this. However, every day she wondered how her vision loss would affect her ability to parent effectively. "M’s" own family life was not without difficulties. Her prior experience made it difficult for her to imagine she could raise a well-rounded, happy child as its mother, let alone as a blind mother. She sought emotional support from friends and family.

"M" suffered extreme morning sickness throughout the duration of her pregnancy, losing weight, and ultimately gaining a mere 12 pounds pre-delivery. Her eye condition resulted in her being classified as a high-risk pregnancy. Though grateful for the medical care she received, "M" admits she fostered no relationships with her health care providers. Instead, she focused all her attention on surviving her difficult pregnancy by walking, swimming, and attempting to eat well when able. She chose not to seek out any additional genetic testing during pregnancy because she knew whatever the results, she had made a conscious decision to carry her baby to term.

Giving Birth and Raising a Child

"M" gave natural childbirth in a hospital in 1996. She chose not to use any pain medications during the process, desiring to be emotionally and physically present during her labor. She had asked her childhood babysitter to accompany her during the birth. Once delivered, "M" ask if her baby had "normal eyes," ignoring a more common line of questioning for new mothers simply inquiring, "Is it a boy or a girl?" When the reply came that the daughter she bore indeed did have normal eyes, "M" was weak with relief. Her greatest fear, that of passing on vision loss, was quelled.

Le Leche International helped her adjust to motherhood. Le Leche helps mothers worldwide to breastfeed through mother-to-mother support, encouragement, information, and education, and to promote a better understanding of breastfeeding as an important element in the healthy development of both baby and mother. "M" attributes much of her maternal success towards this renowned organization, emphasizing how Le Leche members provided multiple opportunities for her to practice diapering, bathing, and proper breastfeeding techniques both before and after the birth of her daughter.

"M" believes her daughter benefited from having both blind and sighted people in her life. To her surprise, she ended up thoroughly enjoying every milestone in her daughter’s development and is grateful that she made the choice to bare and raise her.

As genetic testing has improved over the years, "M" and her daughter have discussed participating in testing. However, her daughter has declared absolutely no testing. "Mom, don’t get tested. And I won’t get tested. I can deal with this. I’ve had to deal with this my whole life, and I love you. If I have children, I will love them no matter what."

"M" says she and her daughter have one of the closest mother-daughter bonds she could have ever imagined. Looking back, despite the initial physical stress, emotional agony, and fear, "M" feels proud of her family and herself as a mother.

Posts from the Blind Parenting Series

Introduction to Blind Parenting Series

Preparing for Pregnancy: A Blind Mother’s Checklist Part 1, Am I Ready?

Preparing for Pregnancy: A Blind Mother’s Checklist Part 2, Medical Implications

Preparing for Pregnancy: A Blind Mother’s Checklist Part 3, Resources and Services

Blindness and Infertility: A Mother’s Story