GOSH mum Layla recounts her daughter's stay on Bear Ward

The operation would be to close her patent ductus arteriosus. The ductus arteriosus is a blood vessel that connects the pulmonary artery to the aorta. This connection is present in all babies in the womb but should close shortly after birth. In some babies, this vessel may remain open and it may cause extra blood flow to the lungs, which makes it difficult for the baby to breathe. We call this a patent or persistent ductus arteriosus.

From hearfelt displays to supportive staff, here Layla recounts her and Amelia's time at GOSH.

"My twin daughters Lily and Amelia were born in July 2020 at 31 and a half weeks.

"Early on, our medical team discovered Amelia had a patent ductus arteriosus (PDA). Usually, a PDA will shrink and close on its own. Unfortunately, this wasn't the case for Amelia.

"After spending nine weeks at our local hospital, she arrived at GOSH for specialist care and surgery to close the PDA.

"There was immense hesitation about the surgery, due to Amelia's condition, size and weight.

"Amelia and I arrived at GOSH in September 2020.

"Amelia’s dad stayed home, to be with Lily. Due to the national lockdown, family members couldn't visit the hospital so I had to manage on my own.

"As soon as I stepped into GOSH, I felt safe. I knew Amelia was in good hands.

"I entered through the bright and colourful double doors and was greeted with a burst of colour in the child-friendly reception area. The walls were covered in hand-painted, brightly coloured sea creatures and other animations. It felt more like an activity centre than a hospital.

"Amelia stayed on Bear Ward, which cares for children with heart conditions.

"Her surgery took place on 29 September, which happened to be World Heart Day 2020. Outside of her room, I found a wonderful display marking the day. It featured drawings and quotes from other children staying on the ward. It was breath-taking. Being greeted by such a heartfelt display was the encouragement and hope I needed to know everything was going to be okay.

"I remember the consultant coming to visit me on the morning of the surgery.

"Although he was super kind and gentle, he was there to tell me all the risks involved. As I listened, it felt like the walls around me were caving in.

"In that moment, his words became mumbled and I couldn't hold back the tears and hide how fearful I was. But I knew that this surgery was a lifeline, and she deserved to breathe at ease and no longer struggle.

"I don't remember the consultant’s name, but he comforted me in the middle of a very difficult conversation. Although he couldn't guarantee the outcome, I trusted him.

"After three hours of frantically pacing Great Portland Street, I received a phone call to say the surgery had been successful.

"I remember sitting in the canteen (the Lagoon) at lunchtime, shortly after receiving the call, and being truly humbled by my surroundings. After months of worry, and walking a fine line in keeping Amelia stable, it was all over – we were out of the woods.

"I felt privileged knowing I would be going back to our local hospital with my baby, but I knew this wasn't the outcome for everyone and my heart sunk.

"GOSH is a special place. Every aspect of the hospital is designed to make patients and families feel welcome and at ease.

"I was amazed at every turn and corner of the hospital and taken aback by all the finer detail.

"Everything about GOSH seems to have been well thought out. It was clear the children were at the heart of every decision.

"I was blown away by the facilities, especially the Disney Reef - so cool!

"During our stay, I found the staff supportive.

"Kimberley the Play Worker was so friendly and a great distraction at a difficult time. Even though Amelia was only two months old, Kimberley was full of ideas and suggestions to mark Amelia's stay and encouraged activities to provide keepsakes to remember her stay. Although we didn't participate in any play, she was a friendly face and checked in every so often with a comforting smile."

"Today, Amelia is doing well and has had no cardiac issues since the operation. We have a check up this month to see the progress.

"My advice for other GOSH parents is to go easy on yourselves.

"Don't feel bad if you take time for yourself. If you look after yourself, you'll be better able to better look after your child. And they need you."