September is Hirschsprung’s awareness month. Meet 16 month old Ffredi from Anglesey, Wales. Ffredi loves climbing, dogs and dancing. Ffredi also has a rare congenital condition called Hirschsprung’s disease that affects around 200 babies a year in the UK.
Hirschsprung’s disease is a rare birth defect that affects the large intestine (colon) and makes it difficult for the body to pass stools. It happens when nerve cells are missing from part of the bowel, leading to blockages, infections, and other serious complications from birth.
In April last year, Arron’s and Georgina’s son Ffredi was born at Ysbyty Gwynedd Hospital in Bangor. Although it looked as though he was initially doing well, it later became apparent that his bowel was not working as it should be.
After two days, Ffredi was transferred to Alder Hey Hospital and over the course of eight days he was treated by the surgical and neonatal teams in neonatal ICU. This included antibiotics, bowel washouts and training Ffredi’s parents on how to look after his condition at home.
Ffredi was then discharged home until August of last year when he underwent surgery at Alder Hey and was fitted with a stoma.
Ffredi’s surgeon Ms Sarah Almond explains “Ffredi needed surgery to fit a stoma, we created an opening in his abdomen to allow waste to be removed from the body. This is needed when the usual route isn’t possible. While Hirschsprung disease is a life-long condition that can present significant clinical challenges like infections, advances in surgical techniques and long-term care have greatly improved outcomes for babies like Ffredi. With appropriate management, patients are thankfully able to live full, active lives.”
Since Ffredi’s surgery, the family has been back and forth between Anglesey and Liverpool as Ffredi needs ongoing care.
“The support me and my wife Georgina have had from Alder Hey from day one of Ffredi being there has been incredible. It was a scary time for us when he was born as he was taken to Alder Hey and we didn’t know how the future would look. But, the team, from the surgical team to the stoma nurses, at Alder Hey have been brilliant with helping us cope and ensuring that we know how to take care of Ffredi, particularly when he is ill. Nowadays, his stoma is just an everyday part of our life that we all cope with well for the most part. He is growing up so quickly and he is the cheekiest, funniest boy we know!”
Arron, Ffredi’s dad
As a thank you to this month, Arron and his friend Jacob will be walking from South Stack (Holyhead) to Penmon Lighthouse on Anglesey – a distance of around 34 miles to raise money for Ronal McDonald House, which became a home from home for the family during their visits.
Find out more about Hirschsprung’s at: www.hirschsprungsdisease.co.uk