When Mariam Al Marzooqi’s three-year-old daughter died in 2008, she thanked God that her child was finally at peace.
“As harsh as that sounds, I was happy for her. She suffered from the day she was born,” Ms Al Marzooqi, 43, said.
Aysha, her first child, was born with short bowel syndrome, a rare genetic disorder that meant her intestines were underdeveloped.
Eating was impossible and Aysha’s body could not absorb nutrients properly, leaving her at constant risk of dehydration and malnutrition. She would be fed through tubes and given supplements to keep her alive.
Her family took her to the US for treatment but, after they returned to the Emirates, her body simply gave out.
Ten years later, in December 2018, Ms Al Marzooqi had a second daughter, Meera, who was born with the same condition.
The girl was taken in for surgery the day after birth and has spent most of her life at Sheikh Shakhbout Medical City, where she has undergone several operations.
Meera was born with only 65 centimetres of small intestine, while those of healthy babies are typically between 200 and 250cm in length.
Like her late sister, Meera cannot absorb nutrients properly and had to be given supplements.
Her doctor put her on total parenteral nutrition, an intravenous method of feeding that bypasses the stomach. Meera was also fitted with a colostomy bag to collect her waste before being discharged and allowed to go back home last month.
“They saved my daughter’s life,” Ms Al Marzooqi said. “And the level of care I saw at that hospital, I didn’t see elsewhere.”
Dr Iftikhar Jan Suleman, a consultant paediatric surgeon at SSMC, said Meera is still dependent upon parenteral nutrition at home but can now also eat some food.
Intestinal atresia is believed to be caused by an inadequate supply of blood to a baby’s intestines during foetal development. This type of intestinal atresia appears to run in families, although a specific genetic cause has yet to be discovered.
Meera has two older brothers who were born healthy.
“It is hard to lose a daughter and harder when you have another one with the same disease but I am hopeful,” Ms Al Marzooqi said.
“Meera is growing. She’s always happy in spite of the surgeries and the regular hospital visits. She is my world. When I look at her, I see hope.”
