To mark what would have been her little boy Sulaymaan’s first birthday, Farah Hussain decided to raise funds to thank staff on the Neonatal Unit at Leeds Children’s Hospital.

Since setting up her fundraising page on the 18th June 2019, Farah has raised a phenomenal £1,765 to benefit staff, patients and babies on the unit.

Aside from developing gestational diabetes, Farah had an entirely normal pregnancy. On the 18th June 2018 she was at St James’s Hospital for a physio appointment when she became concerned that her baby wasn’t moving as much as usual.

Farah, who was just 30 weeks pregnant, was put under observation to monitor her baby’s movements and was told she needed to go to the delivery suite.

A scan revealed that Farah’s baby was pumping excessive blood to his brain, so, that afternoon, Farah was rushed into theatre for an emergency c-section.

Sulaymaan had to be resuscitated at birth and was taken to the Neonatal Unit, while a midwife stayed by Farah’s side and called the ward several times over the next hour for updates on Sulaymaan’s condition.

Farah says, “All of the staff were so considerate, I was given a bed on the post-natal unit away from mothers with their new babies. It wasn’t until around 9pm that I was taken to see Sulaymaan and even then, I just got a quick look at his face and wasn’t allowed to touch or hold him. My husband at the time and I were able to go back to the ward at 11 that night and stroke his little hands while he was on the ventilator.”

After three days in hospital, Sulaymaan was taken off the ventilator and onto CPAP (Continuous positive airway pressure therapy), a machine used to help him breathe normally. However, lowering the sedatives showed that Sulaymaan was still very unresponsive, and wasn’t flinching when having blood tests in his feet.

The consultants looked into this further and realised the situation was worse than they had first imagined, so transferred the family to the Neonatal Intensive Care Unit at Leeds Children’s Hospital for specialist care.

Here, Sulaymaan was put on a ventilator to help build his strength after an ECG machine revealed his liver function was compromised. Sulaymaan still was yet to cry properly, and Farah remembers feeling so helpless, “I remember another baby crying on the ventilator next to us and thinking, I just wish my baby would cry, that’s the first thing you expect to hear when your baby is born and Sulaymaan still didn’t have the strength.”

On the family’s ninth day in hospital, after seeing a cardiologist, geneticist, neonatologist and endocrinologist Sulaymaan was diagnosed with GACI (Generalized arterial calcification of infancy), a rare genetic disorder that affects the circulatory system in addition to other body systems. This affects just 1 in 391,000 babies and has just a 50% survival rate.

The family were told that Sulaymaan’s heart function was just 17% and to prepare to say their goodbyes, but it wasn’t until they’d spent eight weeks on the unit that he sadly died.

Farah is so grateful to staff on the unit who went above and beyond to make the short time she had with her son special, “Sulaymaan was put in an open cot so I was finally able to pick him up and give him a cuddle. The staff became like my family, I could tell they truly cared and they made sure I had lots of things to treasure my son’s memory, like a blanket he’d used and his footprints. It was the little gestures that made a real difference. There is no one more deserving of this money.”