Layla’s Story

This is the story of Layla whose journey involves three hospitals and nine different inpatient areas. Layla’s Mum has shared their family’s experience. Please scroll down for latest updates in 2025

Overall, Layla spent the first 9 months of her life in hospital, with just 10 days at home during this time. Layla was born in Torbay Hospital in December 2020 and needed to be resuscitated numerous times before we were transferred to the neonatal unit in Plymouth. During Layla’s time in Neonatal Intensive Care Unit (NICU), she was diagnosed with CHARGE syndrome, and she underwent her first surgery to correct her bilateral choanal atresia at just 12 days old. Not only were we new parents, but we were also thrust into this new world of doctors, nurses and lots of beeping machines. However, the staff in NICU were brilliant – I always felt that Layla was in the safest of hands, even during the times when she would give us all a fright! After Layla’s surgery, she was able to be moved from the intensive care unit to the high dependency unit and then (Special Care Baby Unit) SCBU, before a transfer back to Torbay hospital after 5 weeks.

We were in Torbay hospital for about a month and a half, over which time Layla’s health slowly deteriorated. Layla was fed via a nasogastric tube, and her tolerance of feeds gradually worsened. Layla began vomiting regularly, this would also affect her breathing and it was very scary for us as a family. Layla was transferred into the Torbay high dependency unit where she went into respiratory arrest – we will always be grateful to the quick thinking, professional team who intervened and saved her life at this point. The following morning, we were transferred by the Wales & West Acute Transport for Children (WATCh) team to Bristol Children’s Hospital. Little did we know we would be spending the next 6 months in Bristol!

Layla was initially transferred to the high dependency unit on the Caterpillar Ward, which was to become our home over the coming months. Due to Layla’s respiratory difficulties, she went into surgery the following day to have further surgery on her choanal atresia. Layla became very poorly after this operation and had to spend nearly a week on the intensive care unit. Again, we were always met by calm, professional and just incredible staff. Even when we had difficult conversations with doctors about the outlook at that time for Layla, I felt reassured that everyone was doing their best for her.

After our short stay in Paediatric Intensive Care Unit (PICU), Layla was transferred back to Caterpillar ward’s high dependency unit. We did briefly go to the ward at times, but Layla’s health was quite unstable, and she eventually needed to be on a bubble continuous positive airway pressure (CPAP) machine for most of the time, to help with her breathing. Layla was also struggling with her feed tolerance, and so she was given a Hickman line and had all her nutrition delivered via total parenteral nutrition (TPN). This was a frightening and bewildering time for us, and Layla kept the staff on their toes! At times the outlook for Layla was not good, but the medical and nursing team around us never gave up on her and worked so hard to keep her stable and to give her a chance, whilst always keeping us as up to date as possible.

There was a lot of debate amongst the medical professionals about the cause of Layla’s breathing difficulties. At 6 months old the difficult decision was made for Layla to have a procedure to close her patent ductus arteriosus (PDA). It was another scary day, but it is now a day that I can look back on with pure gratitude as it was a life changing procedure for Layla. Following her PDA closure, Layla was able to gradually come off her CPAP during the day and her health was a lot more stable. This allowed the team to concentrate on her feeding issues. Layla was fitted with a percutaneous endoscopic transgastric jejunostomy (PEG-J) device and feeds were started very gradually. In September, Layla’s tolerance of feeds had improved to the point that her Hickman line was able to be removed – and after a lot of training, we were able to go home! It was a difficult and life changing journey that we went through, but we are so grateful to all the staff who worked so hard for Layla to not only save her life, but to give her the best quality of life, too. We will forever think of you and hold you all in our hearts.

CHARGE syndrome is a very complex condition and has meant that a lot of different professionals have been involved in Layla’s care. We found that the best care happened when all the professionals worked together and looked at Layla as a “whole person”, rather than just focusing on their individual area of expertise. This was managed brilliantly when we were in Bristol Children’s Hospital through the use of multidisciplinary team (MDT) meetings which we would also be invited to. This was also very important to us, as we felt that our concerns were listened to by the staff, and we were also able to understand why certain decisions were being made. We really appreciated being included in conversations with professionals, and for us as a family it was very important to be able to communicate with the team involved in Layla’s care.

Another important part of our journey was the focus that was put on Layla’s quality of life. During our time in Bristol the play team and the music therapists were amazing at bringing some joy to our room, even on very difficult days. There were many times when Layla would become very unwell and distressed, but the play team and music therapist were able to distract and soothe Layla in a way that I did not believe was possible. Due to witnessing this, I am of the firm belief that these therapies are not just an “add on” but are an integral part of a child’s care.

Update from Jan 2025:

Update from Aug 2025: