World Birth Defects Day – Fadia and Shayaan’s Story

World Birth Defects Day is observed on March 3 each year and unites people and organizations working in the field of birth defects, also known as congenital anomalies, congenital disorders, or congenital conditions.

Globally, an estimated eight million newborns are born with a birth defect every year, of which around 300,000 die due to associated complications. Although it started as an annual event, this day has now become a movement for significant improvement in birth defects prevention and care.

Grandview Kids’ client, Shayaan, was born with a birth defect called Amelia. His mother and a member of the Family Engagement Team at Grandview Kids, Fadia, tells their story:

“The day my second child was born was not a day of joy or celebration for us, but a day of mourning. Our son, Shayaan, was born with a congenital anomaly called Amelia, which means he was born without both arms above the elbows.

As parents of a healthy first child, we never anticipated having a child with a birth defect. Shayaan’s disability brought a multitude of questions and fears, such as how he would learn to walk, use the toilet, eat, and even get married. We went through all the stages of grief, including denial, anger, guilt, depression and finally, acceptance. It took me five months to come to terms with reality and nearly a year for my husband.

Taking Shayaan out in public was another challenge for us as we struggled to cope with the stares, whispers and hurtful comments. Despite our efforts to conceal his disability, we found that we could not. However, it was our seven-year-old son who taught us to focus on the positives. He pointed out that Shayaan still had eyes, ears and tiny feet, and we realized that we had been fixated on what our baby lacked instead of what he possessed.

Shayaan’s disabilities presented new challenges as he grew older, but we found comfort in the network of supportive parents we met through various support groups. We had genetic testing done twice, which revealed that Shayaan’s birth defect was not genetic. Not all birth defects are caused by gene mutations; some are caused by unknown reasons.

Now, at 16-years-old, Shayaan has undergone 16 surgeries and continues to experience pain, but he remains a remarkable young man with aspirations for the future. We quickly learned that he always found ways to accomplish things, and we allowed him to navigate challenges on his own. Shayaan has become an advocate and has been partnering in research to bring awareness by sharing his personal stories and his lived experiences.”