Hassan

One-year-old Hassan wasn’t expected to survive pregnancy, or birth, due to a rare brain condition.

Hassan has Encephalitis Synopsis, an inflammation of the brain so rare, his parents, Iqbal and Haram, have been told there are only three other children in the world with it.

Haram said they first became aware Hassan may have difficulties at the 20-week scan. “He was moving such a lot, the sonographer was unable to scan his brain,” she said. “Then at 24 weeks, they couldn’t measure his head and we were told it was bigger than normal.

“A consultant told us that Hassan’s skull was an abnormal shape. It was open at the back and parts of his brain were growing outside of his skull. He also had hydrocephalus – a build-up of fluid on the brain.

“We were devastated to be told that Hassan wasn’t expected to survive pregnancy, and if he did, he would only live for a few hours. But he continued to surprise everyone.

“We planned to come to Rainbows for him to have comfort care but when Hassan was born, he was breathing well and didn’t need any oxygen. He also took well to a bottle. Everyone was so surprised.

“After five days, he was perfect and getting stronger. We knew that we had to fight for his life. He was fighting and he wanted to live.”

In July, Hassan went to Liverpool for the first of two operations to reconstruct his skull. He also spent six months at Nottingham’s Queen’s Medical Centre to relieve pressure from his brain.

“It has been a huge rollercoaster for us all. And incredibly difficult, but in this journey, Rainbows has been perfect, just amazing,” said Haram. “After my surgery when I had Hassan, I struggled with an infection and health issues. Rainbows were such a great support to us.

“A Rainbows Nurse visited us in hospital and explained everything to us so well. She did activities with us, and we made memories.

“We realised that Rainbows would be the best place for Hassan. When we arrived at the hospice, we saw other children with many conditions and spoke to other parents. We were given so much reassurance and confidence.

“I thought babies like Hassan wouldn’t be able to do normal things that children do and enjoy life, but when he first came to Rainbows, he went swimming and had a massage, It was wonderful. The staff are amazing and have helped us so much. Hassan needs round the clock care and at Rainbows, I am able to rest and become a mummy again.

“We anticipate he will be having surgeries for the next six months to a year. Hassan is very lively and very chatty and the doctors have said he is doing so well. But we know we just take each day as it comes.”