Myles' Hospital Journey - Edinburgh Children’s Hospital Charity

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Myles' Story

Myles' Hospital Journey

“From day one Myles didn’t act like a typical newborn. He would scream from the minute he woke up to the minute he would go to bed and, most concerning, he would vomit his milk on every feed. 

“It got so bad that our other two children were asking to go live with their Nana as they couldn’t cope with the crying. 

“Last year, we were in and out of the old Sick Kids. Myles’ weight dropped from above the 75th centile to below the 9th and he was put on a feeding tube. We tried countless medications, had endless tests and attended clinics, but nothing seemed to work. 

“In March, after a screaming episode that lasted 36 hours, he became one of the first babies to be admitted to the new children’s hospital on its second day of opening. This time, we didn’t go home for 28 days. 

“It was such a worrying time. Myles didn’t gain weight as quickly as we had hoped. He was still very unsettled. I spent hours walking up and down the long ward trying to stop him screaming.

“Being in the new hospital made such a difference. The new playroom was huge and had lots more toys for young babies. We also had access to the lovely Jess Mackie Music Garden – funded by supporters of ECHC. We weren’t allowed to leave the ward so this was a lifesaver. We spent every day sitting in it, getting fresh air and playing the amazing outdoor musical instruments.

“The days on the wards can be very long. We really looked forward to our daily visits from the charity team. There was a silent disco which Myles and daddy enjoyed along with the other children, and he absolutely fascinated by a circus show. He was also gifted a lovely book on Easter Sunday since he couldn’t have an Easter egg.

These activities provided such relief. For that time, we were able to enjoy the environment and forget that we were actually stuck in hospital.

Fiona - Myles' mum

A turning point

“Myles has a very slow digestive system and gut. As his gut has developed, he has slowly started to get better. It has taken almost a full 11 months, but we are now at a point where the vomiting has finally eased. A day I never thought would come! He was also diagnosed with a cow’s milk allergy, which was a real turning point.

“When you have a baby that screams all day long and is being constantly sick in public, you feel like such a failure when you can’t comfort them. People would stare at us and I didn’t want to go out with Myles or take him anywhere.

“I want other parents who have babies with such severe reflux/underdeveloped digestive systems to know that it does get better, something I never believed myself when I was crying daily! There really is light at the end of the tunnel.” – Fiona, Myle’s mum