Cases of Erb's palsy are rare but increasing probably due to good diet and increasing birthweights. Olivia Kelleher outlines the role of a new support group
A young and healthy Mary Verbruggen went in to labour 14 years ago thinking her problems extended to the colour of the blanket to be used to cover her new baby - would it be pink or blue?
However, what happened during the following hours changed her life forever. The delivery of her son Johan was a traumatic experience. The infant's head came with ease but his shoulders got stuck behind Mary's pubic bone creating major difficulties for the obstetrician.
Johan weighed in at a hefty 11lbs though he was born a month premature. Mary and her husband Karel were told their child had Erb's Palsy - a term used to cover a number of paralyses to the arm. It is caused by trauma at birth.
Close to 80 per cent of infants recover from Erb's Palsy in the first three month. Unfortunately, the paralysis in Johan's right arm was permanent. Mary still remembers the feelings of despair that went through her mind when she realised Johan wasn't going to have the use of his right arm.
"Like most mothers of Erb's Palsy children I spent time looking at his fingers to see if they were going to move. You go in to denial. The sad thing is that you blame yourself. Many mothers' think it was their fault."
Mary says the feeling of isolation in those early days will never leave her. She and her husband Karel weren't put in contact with other families in their situation as information on the condition was still at its infancy in the Irish context.
The Galway mother-of-three established the Erb's Palsy Association of Ireland in 1998. Every parent of an Erb's child she contacted was "crying out" for somebody to speak to about the struggles of everyday life. The association has more than 200 members. Meanwhile, the incidence of Erb's Palsy seems to be on the increase. It is believed the growth in cases is linked to the increase in birth weights in Ireland.
Mary is trying to establish communication between her association and obstetricians in Ireland in an effort to reduce the incidence of Erb's Palsy cases. "Because of our diet babies are getting bigger but the mother's pelvic anatomy is not. The condition is considered fairly rare so obstetricians aren't always informed about it."
Johan is in secondary school. A normal, well-adjusted teenager, he has a particular passion for Manchester United. However, life hasn't always been easy for Johan. Mary recalls her son crying "tears of frustration" as a child trying to tie his school laces.
Mary's one regret is that Johan may have received surgery on his arm if the family had known of treatment that was available in the UK. Nerve surgery can be successful in restoring movement and sensation in the arm. However, it can take up to two years to get as much recovery as will occur. Treatment also needs to take place in the first 18 months of a child's life.
"I would have gone to the ends of the earth to get surgery for Johan but we didn't know it was available. That said surgery isn't a guarantee of a perfect arm. But you can get better function of the arm. Having said all that we have to give parents a sense of reality about the condition. Some children just aren't going to recover and you have to move on from that."
The Erb's Palsy Association website is www.erbspalsy.ie