My son Fiachra was born in the Louth County Hospital in Dundalk in September 1994 after a very traumatic birth. It was a pretty harrowing experience for all of us. He had to be extracted and suffered extensive injury.
He was sent to the special care unit in Drogheda Hospital where we were told there was a problem with his arm as well as breathing issues. Then he was sent on to Crumlin hospital.
Seeing your new baby surrounded by beeping monitors is not pleasant. You spend your time trying to guess what the waves and numbers mean. You wonder if one figure goes from 100 to 75, “is it a good or bad thing?”
A breathing difficulty was Fiachra’s main issue initially and after four weeks an MRI gave the diagnosis of Erb’s palsy. We were told that the phrenic nerve from spinal chord to the left diaphragm had been torn off during birth and was interfering with his breathing.
We were also told that other nerves in his arm and wrist had also been badly damaged causing his left arm to turn inwards and his hand to turn out.
Fiachra had surgery when he was six weeks old. The surgeon folded back the left side of the diaphragm to prevent it interfering with the right side. Since then Fiachra has had no difficulties with his breathing.
He was discharged at the age of seven weeks.
Through an Erb’s palsy support group in Britain I found out about a surgeon there who was carrying out work on children with the condition.
We made contact with him in 2004 and he told us that Fiachra was in the most serious category of the condition. Two nerves had been totally torn from the root from the spinal chord so there was no hope of function returning. Two more nerves were ruptured and another nerve was badly damaged.
At the age of six months Fiachra had surgery in Great Ormond Street Hospital in London to return as much function to his arm and shoulder. We knew that there was no hope for his hand and wrist.
After the surgery there was some improvement, but because he was so young it was hard to quantify.
It was only at this stage did it dawn on us that no miracles would happen. When doctors talk about improvement they mean improvement as a matter of degrees. Parents think of improvement as perfection.
Fiachra would have a permanent disability of a serious nature of his arm and hand.
Thanks to the work of Mary Verbruggen in Galway, a group of parents got together to form the Erb’s Palsy Association of Ireland. At first the meeting was dominated by people venting their anger at being kept in the dark by the medical profession.
Many reported that they had not even been told the name of the condition. Those who had been given the name were told it would disappear in three months and were provided with no further information once that didn’t occur. Most were given the impression that there were no other children in the country with Erb’s.
Once the anger was vented, our aim was to spread awareness of the condition. We were convinced, despite what we had been told by the medical profession, that there were a lot more people affected by Erb’s.
We made contact with international organisations and learned that the condition arises in 0.5 per cent of babies born in any country. Eighty per cent of babies born with Erb’s will recover in the first three months, but for the remaining 20 per cent the injuries can mean life-long disability.
Erb’s palsy is essentially a paralysis of the arm caused by trauma at birth. Once the delivery team realise that the child’s shoulder is caught behind the mother’s pubic bone, the child has to be extracted as soon as possible and there are procedures designed to limit the damage.
In some instances of Erb’s palsy, proper medical procedures, which could minimise the damage done to the child, may not have been followed. Because of this, some medical professionals may have adopted a defensive position regarding Erb’s palsy. Thankfully, things have improved considerably in recent years.
As an association, our main aim was to forge links with the medical profession in Ireland to spread awareness of the incidence and long-term effects of the condition. We found that in general there was a lack of appreciation among some members of the medical profession of how serious the condition is and how it can mean life-long serious disability for some.
In time Dr Darragh Hynes and Dr Bryan Lynch set up the Erb’s palsy clinic in the Central Remedial Clinic and later started offering surgery to children affected by the condition.
We sent out information leaflets about Erb’s to every GP and hospital and we arranged a meeting with the masters of the main maternity hospitals in Dublin. We thought they would be very suspicious of us seeing us as a group of angry parents who wanted to sue the hospitals. Through a number of channels we assured them before the meeting that we had no ulterior motive and were not interested in the blame game.
We had a very straight discussion with the masters and requested that the parents of every child born with Erb’s be told about the condition and that the child be put into the system for assessment and treatment. We asked them not to leave parents in the dark anymore and to put the children’s need first. If parents later do decide to take legal action, that has nothing to do with the child.
We would love to see the establishment in Ireland of a uniform standard of practice on how to deal with the delivery of a baby who is in danger of shoulder dystocia in every maternity hospital on the island.
There are now 240 people registered with the association. About 12 per cent of those are adults with Erb’s. Without exception, our adult members report that they were never told what was wrong with them. For many, their mothers carried guilt about their child’s disability. We can’t stop children being born with Erb’s palsy, but we hope that the work of the association has brought about progress – that the number of children affected by the condition is kept to a minimum and those who are affected are affected in only the most minimal fashion.
Of course, many parents go down the route of litigation and some have received very large settlements of up to €1 million. As an organisation we don’t advise parents on this issue. We are not interested in providing a forum for parents to have a go at the medical profession.
It is understandable the parents feel angry, but our primary focus is the child and getting access to assessment and treatment.
Any of the parents I know who have received compensation would without a doubt hand over every last cent to have even a 50 per cent improvement of their child’s condition.
As Fiachra grows into adolescence, image will be a bigger issue for him. His arm is thinner and shorter and he has just limited function in the upper part of his arm and nothing in his lower arm and hand.
He is very independent and doesn’t look for sympathy. Having a disability is of course a drawback but we are determined for him to make the most out of his life. As parents it is important not to spoil a child and give them the dignity of being treated like other children.
For more information about the Erb’s Palsy Association of Ireland, see erbspalsy.ie or phone 0818-300200