Four-month-old Brody was born with CHARGE syndrome, a complex genetic condition which can cause extensive medical and physical difficulties that differ from child to child. Most critically for Brody, it means that he was born with no nasal passage and a grade three critical airway, making it virtually impossible for him to breathe unaided. It was a huge shock for his parents Megan and Josh who had no idea of what lay ahead before he was born.
Brody was rushed to the Noah’s Ark Children’s Hospital for Wales and at 24 hours old, underwent surgery to unblock his nasal passage. He was taken to the neonatal intensive care unit but, despite the stents in his nose, he continued to experience breathing difficulties and came on and off the ventilator several times over the following weeks. It was at this point that the clinical team discovered the additional issue with Brody’s airway which instead of being shaped like a U was V shaped, making it very easy for it to close.
After his oxygen levels dropped dramatically one afternoon, Brody was taken to theatre where exploratory surgery revealed that the antibodies in his body were trying to close his nasal passage again. Brody had bigger stents inserted in an attempt to eventually help him breathe with less support, but though he managed well on CPAP, a less invasive form of ventilation, for a while it wasn’t enough. By now, Brody had been moved from the neonatal unit to paediatric intensive care where he was again, sedated and intubated.
As it became clearer that Brody’s breathing difficulties were complex and potentially long term, the clinical team spoke with his parents about performing a tracheostomy, an opening created at the front of the neck so a tube could be inserted into the windpipe (trachea) to help Brody breathe.
Since the tracheostomy was performed back in March, Brody has been well enough to move from the paediatric intensive care unit down on to Island ward. His breathing has stabilised and it’s hoped that he’ll soon be leaving hospital for the very first time. Megan and Josh are currently learning how to change and care for Brody’s tracheostomy using a training doll funded by the Noah’s Ark Charity – a vital step towards going home.
Practice educator at the hospital, Cheryl Jones says: “The training doll is indispensable to us. Megan and Josh are using it to train tracheostomy care at the moment, but we use it for nasogastric training and subcut injections on Pelican ward too. As well as training staff.”
In 2020, Cheryl also applied to the Noah’s Ark Charity for a grant to fund Shadow Buddies, dolls with a paediatric trach tube connector inserted on the neck, a colourful dressing gown and heart shaped eyes.
Cheryl says: “The buddies are used to support young children through the psychological and physical endeavour that having a tracheostomy brings. I wanted to help put a smile on children’s faces and for them to meet a buddy who has a tracheostomy, just like them.
“Once I saw them, I instantly thought of all the children who come through our doors and the challenges they face. These buddies will go on their journey with them which is just fantastic. I could not be more grateful to the Noah’s Ark Charity for funding them.”
Baby Brody was one of the first patients to receive a shadow buddy and according to his dad, Brody took to it straight away. Josh says: “I’m really pleased that Brody now has a toy that reflects him and the person he is. Hopefully it will teach him right from the start that his trachie isn’t a bad thing and there’s no need to feel different or singled out.”
