From strength to strength: A Christmas at home for Ronan

Five-year-old Ronan has spent more time in hospital than most people do in a lifetime. After his mum, Natasha, went into labour three months prematurely, Ronan needed specialist life-saving surgery at Great Ormond Street Hospital (GOSH), over 120 miles from his home. Thanks to charity funded parent accommodation, his parents could stay just across the road as doctors battled to save him.

Miles from home

“In August 2011, my wife, Natasha, went into premature labour,” recalls Kevin-Joseph, Ronan’s dad. “We were on holiday with our two-year-old son, Kayden, in Norwich, and we weren’t prepared for our little boy to arrive – let alone anything that was to follow.” 

Weighing just 2lb 6oz at birth, Ronan had difficulties breathing and was immediately put onto a ventilator. “I remember looking at our boy and watching his monitors for any sign of improvement,” says dad. “We saw him struggle every day, his alarms going off constantly as he would stop breathing, doctors struggling to get him breathing with the ventilator.”

Moving on to intensive care

At three weeks old, Ronan was transferred to Birmingham Children’s Hospital Intensive Care Unit (ICU), where the doctors discovered how poorly he really was. “He was born with a PDA (hole in the heart), a left pulmonary artery sling (where the left artery is wrapped the wrong way around his throat) and tracheal stenosis (narrowing of the airway). Ronan was given only a 20 per cent chance of survival, but no matter how small the chance, we were never going to give up.”

Doctors advised that a slide tracheoplasty operation could create a larger airway to help Ronan’s breathing, but at the time he was only half of the recommended 3 kg weight for surgery. “We made the decision to go ahead with the surgery,” explains dad. “Despite the risk of Ronan being too small to survive the procedure, it was our only hope."

Life-saving surgery

The next morning, Professor Martin Elliott came up from GOSH to perform the slide tracheoplasty operation. The family said their goodbyes to Ronan and hoped for the best. After six long hours of surgery, Ronan came out safe and with a new larger airway.

“Ronan was still on a ventilator because his airway was floppy, but he was in a much better place than the night before. The doctors told us that it would be best for Ronan to be monitored by the team that had performed the slide tracheoplasty, which would mean going to GOSH – our fifth hospital in four months.”

Arriving at GOSH

After the family arrived at GOSH they found out that despite the success of the slide tracheoplasty, Ronan still had a narrowed airway and weak bronchioles. At the same time, Ronan was having difficulties tolerating his milk, which was preventing him from gaining any substantial weight.  

The issue with Ronan’s digestive system was caused by a narrowing of the large bowel, so it was decided that Ronan would have surgery to remove some of his large intestine to correct the problem. The surgery was successful and Ronan began to tolerate his milk, and just a few months later his weight had increased to 3.53kg. However, his airway was still a concern.

“We only had one solution left to try to get him off a ventilator – a metal stent,” recalls dad. “It was not the best solution, but it was the only choice. We agreed to the surgery and Ronan had a metal stent implanted into his trachea. It was a success – Ronan came back from surgery on lower ventilations settings and a chance of coming off the ventilator at some point in the future.” 

Speaking of their time at GOSH, Ronan’s mum, Natasha, said: “We were over 120 miles from home and our baby’s life was constantly in the balance. Thanks to the charity funded parent accommodation we didn’t have to worry about where we were going to stay. It was a relief to know that during the night, when we couldn’t be by his bedside, we were only across the road from intensive care and could run over if anything changed. It also meant that my two-year-old son, Kayden, could come and visit.

"It was so important for Kayden to meet his new brother and spend time with his mum and dad."

From strength to strength

Ronan was transferred back to Birmingham Children’s Hospital ICU to recover and reduce his ventilation. He was no longer sedated with drugs and his personality was beginning to develop. “He was getting bigger, stronger and breathing more on his own. He was beginning to interact with us and his big brother – things we had only dreamed of when he was born.

“Ten and a half months after Ronan was born, he came home for good. He still has his ups and downs and we need to be regularly checked at GOSH, but he is home and that is more than we could have hoped for after all he has gone through.”

Christmas at home

Ronan spent his first Christmas in Birmingham Hospital and after further surgery at GOSH he was able to spend his second Christmas at home with his family.

“Ronan was very poorly during his first Christmas," recalls mum. "We were with him constantly but wanted to try and make Christmas day as normal as possible for Kayden, who was only two years old at the time. We spent a few hours at my mother in law’s, having Christmas dinner and opening the presents with Kayden, and it was really hard thinking of Ronan in hospital.

“The following Christmas we had Ronan home, something that at one point we feared would never happen. It was really special and we couldn’t help but spoil him.”

Together at Christmas

We are the official charity partner of Sainsbury’s this Christmas. Check out the official Christmas ad and head to your nearest Sainsbury’s store to buy specially-created gingerbread men and film animation kits – 50p from every gingerbread man and £2 from every animation kit will go to Great Ormond Street Hospital Children’s Charity. You can also make a donation at the till when you shop in store – just tell the cashier how much you’d like to give.

All the money raised by Sainsbury’s will go towards providing accommodation for families of children at the hospital. Visit the Sainsbury’s website for more information.

With your support, Great Ormond Street Hospital can help more children like Ronan and their families. Donate directly to Great Ormond Street Hospital Children’s Charity and help raise money for:

  • Rebuilding and refurbishment
  • Research
  • Equipment
  • Children and family support

Donate now