This is the story of Isla who has spent her first year of life in hospital. Isla’s journey involves three hospitals and six different inpatient areas. Isla’s Mum has shared their family’s experience.
“Isla was born at 24+1 weeks at Southmead due to me naturally going into labour. Isla weighed a whopping 517grams. She spent 10 weeks in Neonatal Intensive Care Unit (NICU) (8 intensive care and 2 high dependency) before transferring to Great Western Special Care Baby Unit (SCBU). Isla remained on there for three weeks before we realised, she couldn’t make any more progress. At this point she was on Optiflow 5 litres but scarily kept dropping all her saturations at any given moment. We had to wait for three weeks for a bed which was awful as a parent as everyday she looked slightly worse.
Isla arrived in the Paediatric Intensive Care Unit (PICU) within Bristol Royal Hospital for Children at 4 months old weighing 2.83kg. She remained on there for a couple of weeks initially and it was discovered that she had pulmonary hypertension. She was given medication and was put onto bubble continuous positive airway pressure (CPAP), because of the improvements she made she was transferred onto Caterpillar (High Dependency Unit) HDU. It was on Caterpillar, when a doctor asked if I had any more questions and I simply stated, ‘I know she’s small, but she doesn’t make much noise’. Which the team soon came to realise, as when she knocked her mask off, and the bubbles stop you wouldn’t know she wasn’t happy until the saturations monitor alarmed. With my observation the Speech and Language Team (SALT) came to review her airways with a camera, this initially showed there was an issue. Shortly after we were back on to PICU due to her saturations fleeting up and down. Whilst she was there, she had a computerised tomography (CT) scan which showed she had a cyst above her vocal cords, left vocal cord palsy and a large compression of her trachea. With discussions with Great Ormond Street, it was decided she would have an aortopexy in Bristol.
On November 29, Isla had this surgery. I would love to say her recovery went swimmingly but unfortunately did decide to scare everyone the following days needing cardiopulmonary resuscitation (CPR). She went back to Caterpillar on December 23rd where unfortunately she only remained for four days before returning to PICU on 27th with an infection, this turned out to be kidney stones. From November to January are quite a blur as she was on a lot of sedation / making progress then going backwards / body temperature control issues. With Isla still not making huge progress it was decided she needed to have her patent ductus arteriosus (PDA) closure (which is what we originally came in for in September however due to her compression in her windpipe and the pressure in her lungs it was too dangerous).
Isla had surgery on 8th February and since then she has turned a corner and she is making great steps forward ventilation wise and developmentally. Since surgery she has gone back to Caterpillar HDU and has started to have a mix of oral (bottles and purée tastes) feeds and pump feeds from guidance from the SALT and dieticians. Also had a scan to check her swallow is safe, however because she hadn’t had a bottle since September 2021, her oral feedings were progressing slowly so we decided with the team it would be best for Isla to have a percutaneous endoscopic gastrostomy (PEG) which would help relieve her nose from pressure sores from the nasogastric (NG) and help the NIPPY 4 ventilator mask sit better on her face. We are still progressing nicely with our oral feeds. Isla has recently moved out of HDU and is now on Caterpillar A side and is awaiting transfer to Swindon. Then hopefully finally home to meet family!
Thank you for saving our baby on numerous occasions. We will forever hold everyone who has looked after Isla close to our hearts and be forever grateful. Apologies for her keeping everyone on their toes but as we all know Isla does what Isla wants”
