Hafsa's Story

Unlike most parents who visit our hospital for the first time, Faizah didn’t arrive with her child. She was still pregnant with her daughter, Hafsa, who just a few weeks earlier had been diagnosed with spina bifida at Faizah’s 20-week scan. Faizah was at the hospital to have a detailed MRI scan and meet with doctors who would treat her child once born. 

Faizah said: “I had never visited the Children’s Hospital before and didn’t have any expectations, but when I arrived and walked through the main entrance, my overwhelming thought was ‘this is a children’s hospital?’ It was dark, dated and cold, not child-friendly at all, and not somewhere you’d think world-class treatment takes place every day.” 

Faizah had had a tough pregnancy from the start. She had experienced severe nausea and at one point was hospitalised because of it, but at no point did she think there was anything wrong with her baby. However, her 20-week scan showed that Hafsa had an opening in her back, where her spine hadn’t formed properly. Faizah was told that her baby would be born partially paralysed, potentially have learning difficulties, plus many more complications. It was devastating news for Faizah, but she knew she could give Hafsa the best opportunity of having a good quality of life. 

Doctors investigated whether they could operate on the baby in utero – a special procedure which could only take place abroad – but when the time came to go, Faizah was too poorly to travel. Instead, she gave birth via c-section at specialist Birmingham Women’s Hospital and baby Hafsa was transferred to the Children’s Hospital just 24 hours later. As well as her spina bifida, Hafsa had hydrocephalus – a buildup of fluid on the brain – which is common for children with her condition. She underwent surgery to close the gap in her spine, and have a shunt fitted to drain the fluid on her brain. Hafsa was on the neonatal surgical ward for two weeks, before Faizah was finally able to take her home. 

Now five-years-old, Hafsa has defied the odds. Although she initially had no movement in her legs, over the years she’s developed her strength and now has good movement above her knee. It means she can play sports she loves, including wheelchair basketball and tennis. Thankfully, she hasn’t experienced a cognitive delay either, in fact, thanks to her regular interactions with doctors over the years, she’s a lot more confident than other kids her age. 

However, due to the complexity of her conditions, Hafsa is under the care of multiple teams at the hospital, including neurosurgery, orthopedics and urodynamics, and visits for check-ups. Most recently, she received major surgery on a dislocated hip, which kept her in hospital for a few weeks after she developed an infection. Whilst Faizah can’t fault the medical treatment and care Hafsa’s been given over the years, the entrance itself is a challenge for the family.  

Faizah says: “I bring my mum to appointments with me, so she can wait with Hafsa in the main entrance while I park the car, but it’s so cramped with such a busy walkway. There’s nowhere for them to sit, and you constantly feel like you’re in the way. It’s stressful and not the calming environment you would want your child to be in before an appointment.” 

The family often has multiple appointments on their visits, which means on some days they can be in hospital for hours, with long breaks in between.  

Faizah said: “There’s a lot of preparation I do when I know we’re going to be at the hospital all day. I pack a bag full of snacks, but also activities for Hafsa, as there’s not much there that will help us pass the time. I would love if there were a small play area where Hafsa could get out of her wheelchair and stretch her legs, or areas for colouring, which would help to distract her for a little while.   

“This is a leading hospital, with world-class clinicians, where Hafsa has received the best care and treatment. I just wish the environment reflected that.”  

Our It Starts Here Appeal will change the experience of our families. The current entrance way will be transformed into an open, welcoming, child-friendly and exciting place, where families can go to decompress or spend some time with their children before or after appointments. It will help make the hospital a fun, enriching and joyful place to be, instead of a scary or clinical one.