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Baby Noah Madden has spent his entire life in hospital but now, at the age of nine months, his parents are hoping he can come home at last.
First-time parents Lucy Helling, from Strood, and Thomas Madden, found out their son would be born with fluid on his brain at a scan 22 weeks into Lucy’s pregnancy.
She said: “We went in for our scan and we were told he was a boy. They said he wasn’t in the right position so told us to go for a walk. We already had a girl’s and a boy’s name picked out.
“We rang all of the grandparents and great-grandparents to tell them we were having a boy before we went back to the hospital. Then we found out that he had fluid on his brain and that it was very severe.
“They said we would be lucky if Noah made it through the pregnancy, and that if he did he wouldn’t be able to move or talk, but we were already in love with him.”
Noah was born by caesarean section at King’s College Hospital in London, and when he was just two days old he had surgery to insert a shunt to relieve the pressure on his brain caused by the fluid build-up.
A few days later Noah stopped making noises and was diagnosed with chronic lung disease. Doctors also found that a cyst had formed on his vocal cords.
Noah was then moved to the Evelina Children’s Hospital, also in London, where he was put on a ventilator for four hours a day for two to three months.
When he was six months old he had another operation to insert a ventilator directly into his throat to help his breathing 24 hours a day. Noah was then moved to a long-term ventilation unit. He has had a feeding peg put directly into his throat.
The ward has six beds for children who rely on specialist equipment to help them breathe and is designed to ease the move from hospital to home.
Lucy said: “He can smile and he’s always kicking his legs. He’s doing everything they said he wouldn’t be able to do. He’s always smiling. He’s such a happy baby.
“He might have development issues, but we’ll find out as time goes on. He is a little bit behind on his milestones but he’s trying to sit up by himself now. He’s doing really well. If you look past the tubes he’s a normal little boy.”
The family are hoping to be able to take Noah home in the next few weeks.