Daniyal

Daniyal has just had his first birthday. Yet he has never seen his home, or slept in his own bed, because he has spent all of the first year of his life in hospital.

Daniyal was born with a hole in his diaphragm. His liver and bowel were partly in his chest, and they were squashing his lungs. At four days of age he had his first operation in St Mary’s Hospital to repair his diaphragm. But because his lungs hadn’t had room to grow, he still couldn’t breathe properly. It was the start of a long fight for his life.

He spent four months in neonatal intensive care at St Mary’s, Manchester, mostly on a ventilator. At times he was desperately ill, and we lived in constant worry. When Daniyal was almost five months old, he needed to be transferred to the Royal Manchester Children’s Hospital for ongoing specialist care. Because St Mary’s Hospital is on the opposite side of Manchester, he had to be transferred in his fragile state by ambulance.

Initially he was in the High Dependency Unit with a special breathing machine called CPAP on his nose, but he really struggled. He couldn’t feed, and he had these frightening “blue dos” where his lungs just wouldn’t work and his skin would go a horrid colour; we just lived from hour to hour. He was taken to the PICU and put back on a ventilator, which seemed like a massive backward step to us.

In January we were told he would need to be on a ventilator until he is at least two years old - maybe longer. He then had to go to theatre for a “trachy” which is a breathing tube in his neck that made it more comfortable for him to be attached to the ventilator. Although this looked strange, it also meant that that we had more contact with him as with no tubes in his mouth he could smile and communicate with us. However, he was constantly being sick and not gaining any weight, so in April he had another operation to have a feeding tube inserted into his stomach.

Every day is different. Some days everything seems good, and we think we are getting somewhere. The next, Daniyal has an infection and has a high fever; he can go blue and his heart almost stops. But Daniyal is getting stronger. He hasn’t had a “blue do” for over a month, and he is managing on a smaller battery-powered ventilator, so at long last we are thinking about getting him home. This week we moved to Transitional Care Unit at Booth Hall, where the staff are teaching us how to look after Daniyal’s medical needs and his equipment.

Regardless of all he has been through Daniyal loves having us and his brother with him. He is a normal little boy, who loves playing with paints and then being cleaned up in the bath. He has painted cards for all the doctors and nurses as a leaving present! The staff who care for him are incredible. Apart from the dedicated care they are giving Daniyal, they have given us immense understanding and support throughout.

The team looking after Daniyal is huge and includes many specialties. So it’s not surprising that after a year in hospital, his notes weigh more than he does! The piles of paper are impressive, but it can take the doctors a long time to collect all the information they need to make the best decisions, and there are too many notes to keep on the ward.