Alfie to spend first Christmas at home after half his life in hospital

Alfie Howell was born in April 2013 with a rare bone growth disorder called achondroplasia, which results in dwarfism, and only affects one in 25,000 people.

Parents Steve, aged 32, and Zoe, 36, who are both teachers, initially brought him home to be with sister Maisie-Grace, who was 15-months-old at the time.

But when Alfie was 12-weeks-old, he stopped breathing in Zoe's arms and was rushed to hospital.

He stopped breathing several more times over the following months and was taken back to hospital by his family, who live in in Stourbridge, on September 6 last year.

Alfie, who is now 18-months-old, remained at Birmingham Children's Hospital throughout Christmas, and was there for a total of nine months up until June 13.

He was also diagnosed with epilepsy during his long stay as an inpatient but is now back home and looking forward to Christmas.

Mr Howell said: "Alfie has only ever met Santa in a hospital so we want to find somewhere else to go and see him before Christmas this year.

"It's just so great to have the whole family at home to give him a normal Christmas.

"There aren't any hospital appointments until January now, so we are trying to make the most of a few days off together, after all that has happened.

"A couple of weeks before Alfie was born, a scan showed he had some issues with the length of his bones.

"Further scans showed he had skeletal dysplasia, a genetic disorder causing dwarfism.

"It was a huge shock, especially as the birth was so imminent. We just wanted him to be born and to see he was OK.

"We didn't know what he was going to look like, how severe it would be, and how it would affect his health.

"We got him home, but one day he fell he stopped breathing while Zoe was holding him.

"She was petrified, but she acted quickly. She gave him mouth-to-mouth resuscitation, called an ambulance and got Maisie ready to go to hospital. It was chaotic."

The youngster stopped breathing again when the family were at Manchester Airport in August waiting to go on holiday to Portugal.

Mr Howell said: "We gave him mouth-to-mouth resuscitation in the airport café then he was rushed to the nearest hospital, put on a ventilator then transferred to Manchester Children's Hospital, where he spent a week suffering from pneumonia.

"Alfie stopped breathing again on September 6 and was rushed to hospital, ventilated then transferred to Birmingham Children's Hospital.

"At his worst, I counted 27 seizures over a period of 10 to 12 hours. It was harrowing for everyone in the family.

"He stayed on the high-dependency ward because he was so unpredictable.

"He'd go blue, and that's when the nurses and the crash trolley would come out.

"Sometimes it would go on for prolonged periods, up to five minutes, of him not being able to breathe for himself."

Alfie had to spend last Christmas in hospital but was visited by Santa and given gifts by staff.

The tot had undergone a major operation in the run-up to Christmas last year, to release the pressure of fluid on his brain.

It was a successful procedure but didn't solve his problems.

In March, he had an eight-and-a-half hour operation to remove a piece of bone from the base of his skull to avoid a build-up of pressure on his spinal cord.

Alfie was finally diagnosed as having epilepsy in May, after everything else was ruled out.

Suitable medication meant his seizures could be controlled and so, on June 13, he was finally able to go home and he has not had a seizure since.

He also receives regular physiotherapy for his developmental delays.

Mr Howell added: "Alfie's speech is delayed, although he says things like 'mamma' and 'dadda'. Doctors predict he will grow to around 4ft 8ins (1.4m) but he could be smaller. It's hard to tell at the moment.

"We know he'll have health issues which will impact on his life.

"But he's a fighter, he's already shown us how he gets on with life, no matter what.

"This will be his first Christmas at home, his first birthday at home, he'll take his first steps here.

"This Christmas will be extra-special as he's finally home."