1 in 50,000: Sonny’s Story

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Lee and Emma stayed in the Ronald McDonald House in Cardiff for seven months, from October 2017 until July 2018, while their baby boy Sonny was being treated in Noah’s Ark Children’s hospital.

On 20 August 2017 at 9.36pm, Emma gave birth to Sonny at her local hospital, Neville Hall, Blaenavon. Sonny was born weighing 3lbs 10oz. With nothing detected during pregnancy, it was a big shock for Emma and Lee to find out that their baby has been born with an Ultra Long Gap, a type of Oesophageal Atresia. Sonny was born without a fully formed oesophagus and the rarest type of Ultra Long Gap. Only one in 50,000 will suffer this condition.

“SONNY HAD HIS FIRST OPERATION AT JUST TWO DAYS OLD”

The day after Sonny was born, he was transferred to Birmingham’s Children’s Hospital, where Lee and Emma stayed in Ronald McDonald House Birmingham for three weeks. Whilst they were there, Sonny had his first operation at just two days old. When Sonny was born, the couple were in complete shock, they were heartbroken at the news. It was so unexpected.

The Davies family arrived at Ronald McDonald House Cardiff in October when Sonny was transferred down from Birmingham. He spent his first five months on NICU ward. He had never been outside and seen the world. Emma and Lee felt like they had lost the feeling of him being theirs, as they couldn’t take him home or even out of the hospital ward.

At this point, Sonny had a narrowed airway. They had to wait until January to assess the narrowing of his airway to see if his oesophagus has grown. Unfortunately, it hadn’t.

“SONNY WAS PUT ON LIFE SUPPORT NUMEROUS TIMES”

Following this Sonny had a gastric pull-up, which is a surgical procedure that replaces a section of his underdeveloped esophagus with reconstructed stomach tissue. They pulled his tummy up behind his heart.

To widen Sonny’s airway the surgeons had to perform a cricord split, whereby they cut the top ring of his airway to open it up. This was unsuccessful and meant that Sonny was put on life support numerous times, to keep him breathing. His airway was narrowing, he couldn’t breathe by himself. Surgeons had to perform major surgery on Sonny to reconstruct his airway. They took the cartilage from his ribs and placed it down his trachea.

At the end of February, once the procedure was carried out successfully, Sonny was encouraged to start feeding. He was showing encouraging signs of hunger. This was a great feeling for Emma and Lee, they thought their baby was on the road to recovery!

However, problems started to occur during Sonny’s feeding. The doctors carried out a swallow test and found that Sonny was aspirating; more than half of the food he was swallowing was going into his lungs. This would have been a horrible feeling for Sonny, but throughout the whole time of feeding incorrectly, Sonny showed no sign of distress or discomfort. Much to Emma and Lee’s dismay, Sonny was put back on life support again.

They needed to build up feeds with Sonny. To help overcome this hurdle, Sonny was given a jejunostomy – a feeding line that goes straight into the intestine, to help directly feed him without him choking and stopping breathing. Shortly after the feeding line was fitted to Sonny’s intestine it got badly infected. Emma could remember it vividly, the smell of the infection was like the smell of rotten flesh. They quickly had to remove the feeding tube.

“HE IS LEARNING HOW TO FEEL HUNGRY AND HOW TO EAT PROPERLY”

The next step was to replace with a hickman line, which meant Sonny was being intravenously fed. He had a Monty Jejunostomy tube put into the intestine through a valve, resulting with Sonny having a stoma. He is now fed through his stoma, directly into the intestine. Sonny currently receives long 18-hour feeds, usually overnight, followed by a six-hour gap. This is his regular feeding pattern. Alongside this he is learning how to feel hungry and how to eat properly. Whilst he was in hospital the play nurses and play specialists really helped Sonny to engage with his senses, to try and help him feed.

Throughout his first year of treatment, he received a series of steroids and hormones to help fight his immune system.

Being able to stay in the House during the time of Sonny’s treatment was a life-saver for both Emma and Lee. They both gave up their family home in Blaenavon and lived permanently in Ronald McDonald House Cardiff for seven months. It became their home. Emma had severe anxiety even leaving the hospital grounds, so being able to stay within the grounds just moments away from Sonny, meant everything. Knowing they were only steps away from their baby boy reduced all levels of panic for couple and gave them peace of mind.

“BEING SO CLOSE DURING THIS TIME WAS SO IMPORTANT”

The phone line in their bedroom was key. They often had phone calls in the middle of the night from the nurses, asking Emma to go over and feed Sonny. Being so close during this time was so important to creating a routine for Sonny and Emma.

Being able to talk to other families in the House was a big comfort to them, as well as being able to speak to the staff without feeling any judgement was being passed. They have made friends for life in the House.

Emma and Lee dealt with the situation in different ways. Lee had to go back to work and had a nine-year-old son to help look after as well. Lee found life in the Birmingham House particularly hard as he was so far away from his other son, Jayden.

Despite all of their ups and downs, Emma and Lee were very happy and excited to celebrate Sonny’s first birthday in August! Sonny has grown from a tiny baby lying in an incubator, covered in wires and detached from the world, into a strong and extremely happy baby, who is trying to walk and talk and is ready to face the world.

Every day Sonny is growing stronger and stronger at home! He just keeps getting better and better!

To say thank you to Ronald McDonald House Charities, Emma and Lee have planned some amazing fundraising events. They have already raised a fantastic £1,546 with a raffle in the local community. They raffled off a variety of prizes from champagne and whiskey to manicures, blow dry’s and fancy dinners.

Their next fundraising adventures are more action-based. Emma is planning to do a skydive before the end of the year and Lee would like to complete the Offa’s Dyke Path challenge; a trek along the English/Welsh border that is 177 miles long. We can’t wait to see these events!

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