Dr. Chakraborty wanted to start Zara’s treatment, but her lungs collapsed on the day she was scheduled to receive her first injection, and she spent a month in intensive care, including a 10-day ventilator. rice field. During that time, she lost all movement in her legs and her ability to swallow was greatly reduced, necessitating her feeding tube.
She started enzyme therapy when she was six and a half months old, but her disease progressed.
When Zara was 2 years old, her parents made the difficult decision to stop her treatment and provide palliative care only. She died peacefully at her home five months later.
Dr. Chakraborty, whose daughter was born four days after Zara, couldn’t help but notice a heartbreaking contrast.
In 2016, Qureshi became pregnant again. Her prenatal check-up revealed her severe pompe again.
Bashir and Qureshi decided to stop baby Sara from enzyme therapy and offer only palliative care.
“It was a very difficult decision,” said Qureshi. “But there was no hope. We didn’t want her to suffer.”
Sarah died when she was eight months old.
In early February 2020, Dr. Chakraborty received a call from Qureshi. She is pregnant again, and her prenatal test showed that her unborn baby also had severe Pompe disease.
Qureshi and Bashir decided they wanted to treat the fetus in the hope that it would improve treatment and, if not save the baby after birth, perhaps lessen her suffering.
