‘It’s like a second home to her, this hospital’: Meet Zarwa

Born three days before Christmas in 2017, Zarwa has often spent her birthday in hospital. That means she’s celebrated a lot of festive seasons on a ward.

Being away from home during special celebrations can be challenging for seriously ill kids, but the teams at GOSH do everything they can to create merry memories for both patients and their families.

“The lead-up to Christmas at GOSH brings really touching moments,” Fahima, Zarwa’s mum, says. “We went to sleep at night and woke up to see that all the decorations had been put up in the hospital.

“Zarwa got loads of presents too, and she got to meet Santa and the Grinch!”

Zarwa has been in and out of hospital her whole life. She was only a week old when she developed bronchiolitis, a common lung infection in young children. Doctors ordered an echocardiogram, which didn’t reveal anything unusual, but Zarwa continued to get chest infections.

So, Fahima decided to take her daughter to A&E. “I didn’t want to keep giving her antibiotics every month,” she says. “I wanted to know why she was so unwell.”

There, Fahima was told that Zarwa had a heart condition, and they were referred to another hospital. In 2019, about two years later, Zarwa had her first surgery to put in a mechanical valve. During the surgery, doctors discovered that she had a narrow airway, and a genetic disorder was also suspected.

The hospital wasn’t able to perform the necessary balloon dilations to open Zarwa’s airway, so she was transferred to GOSH.

Upon arriving at GOSH, Zarwa and her family met with her new ear, nose and throat team. Soon after, she underwent an airway reconstruction. The operation revealed that Zarwa also had pulmonary hypertension – high blood pressure in the blood vessels that supply the lungs.

“Because of Zarwa’s hypertension and how complex her condition is, we were referred to GOSH for cardiac care as well,” Fahima says. “Now everything’s under GOSH, even her dentist.”

A valve replacement followed later on, which required Zarwa to have teeth extracted and her tonsils out. Fortunately, the surgery was a success, and Zarwa’s heart is now functioning well. But her health challenges aren’t over.

During her daughter’s stays at GOSH, Fahima has relied on free, home-from-home accommodation, which is funded by Great Ormond Street Hospital Charity (GOSH Charity). This allows her to stay close to the hospital – and to Zarwa.

“The accommodation has been amazing. If we didn't have it, I don't know what I’d do,” she says. “My son’s four-and-a-half years old, and he’s autistic. He spends the day with me on the ward, and every evening, my husband picks him up and takes him to the accommodation.”

Zarwa has also benefitted from sessions with the Play team, another service fully funded by GOSH Charity. The team helps make a hospital a bit less hard and a lot more fun for patients and their families.

“After her surgery, Zarwa didn’t laugh or smile much,” Fahima shares. “I remember when Lizzie, a Play specialist, and a nurse came to try a CPAP mask on to help with Zarwa’s breathing, as she has an obstructive sleep disorder. Lizzie made her laugh so hard!”

When Fahima became pregnant with her son, she decided to do a second round of genetic testing for Zarwa, which took place at a different hospital. She learned that Zarwa has geleophysic dysplasia, a rare type of dwarfism.

“We were told there are only about 33 people like her in the world,” Fahima says.

Now, Zarwa is almost eight years old. She loves arts and crafts, and anything Disney; her favourite character is Moana. She continues to come into GOSH for regular check-ups and will be spending Christmas with her family at home.

“This is normal life for us now,” Fahima says. “It's like a second home, this hospital.”