Dr Chakraborty wanted to start treating Zara, but on the day she was supposed to be first infused, her lungs collapsed and she had to spend a month in intensive care, including 10 days on a ventilator. During that time, she completely lost movement in her legs and her ability to swallow deteriorated to the point that she needed a feeding tube to eat.
She started enzyme therapy when she was 6 months old, but her disease was still progressing.
When Zara was 2 years old, her parents made the difficult decision to stop treatment and only provide palliative care. Five months later, she passed away peacefully in her hometown.
Dr Chakraborty, whose stepdaughter was born four days after Zara, couldn’t help but notice the heartbreaking contrast.
In 2016, Ms. Qureshi became pregnant again. Prenatal testing showed that Pompe was exacerbating again.
Mr. Bashir and Mrs. Qureshi have decided to forgo enzyme therapy for their baby Sara and offer only palliative treatment.
“It was a very, very difficult decision,” Ms. Qureshi said. “But there’s no hope out there, and we don’t want her to suffer.”
Sara died when she was only 8 months old.
In early February 2020, Dr. Chakraborty received a call from Ms. Qureshi. She became pregnant again, and prenatal testing revealed that the fetus also had severe Pompe disease.
Ms. Qureshi and Mr. Bashir have decided that they want to treat the unborn baby, hoping the treatment has improved and even if the baby cannot be saved after the birth, perhaps her pain will lessen. .
