`In Ireland, the champagne corks pop when you have a big baby, but few people realise a big baby carries a risk of being damaged during birth. Obstetrical Erb's Palsy can occur when the baby becomes trapped by a shoulder behind the mother's pelvis, after the head has been delivered. Fragile nerves in the child's neck and arm may be over-stretched or even torn from the nerve root in the spinal cord in the effort to deliver the rest of the baby. Irish women are in the top three of European countries regarding birth weight, so Irish mothers and babies are a high risk group for Erb's.
Babies are being born bigger and bigger as a result of better nutrition and health, but the female pelvic anatomy is remaining the same size. Parents tell us that on diagnosis, very little information is offered to them about the condition. Depending on the damage to the nerves, Erb's Palsy has differing degrees of severity. In about 80 per cent of cases there is total recovery within three months. In these cases, the nerves have been stretched like elastic and snap back into position. But for the other 20 per cent, there is serious disability because the nerves are too over-stretched to snap back fully, or because they have been severed completely.
In my son, Johan's case, the root of the nerve was completely torn out - he will never recover from the injury to his right arm. The way you recognise the condition in most cases, is that the hand is in the "waiter's tip" position, with the arm rotated in towards the body and the palm held facing backwards as if to receive a tip. However, in Johan's case, his hand is in what I call the "beggar's position", with the palm facing up. He can carry his books under his arm, or a light object with his hand, but he has no individual fine movement of the fingers.
Nothing can prepare you for having a baby with a birth injury. The problem most women have in accepting their child has Erb's is that their babies were perfect for nine months in the womb and everything seemed to be going well.
When I presented myself in the labour ward, my main concern was would the baby be a boy or a girl. I had no suspicion whatsoever that there could be any kind of a problem. After a fairly horrendous labour which began at 7 a.m., Johan was delivered at 11.25 p.m. - one month prematurely. His head was born without any difficulty, but his shoulder got stuck behind my pubic bone. They were intubating his head even though the body was not delivered, and when he eventually was fully born it was obvious he was far bigger than anyone had suspected.
The prenatal scan had estimated Johan would be 8lbs 5 ounces; he was 11 lbs. They started working on him immediately and had quite a struggle to resuscitate him. I could see them working on him and I didn't know if he was dead or alive. The whole room was still and there was no reaction from him for a long time.
I was first told the following morning, when Johan was a day old, that he had Erb's. I was devastated. Your baby is in the special care unit, you are in a room alone with no visitors, no flowers, no celebration because everybody is afraid to come near you.
The first sign of hope was when a friend with a baby with a serious birth defect came to visit me. She was the only one who knew where I was at. What she said to me that day is the thing that remained with me. She said: "I cannot promise you your baby will be fine, but I can promise you you will get through this." And that is the message we are trying to get across in the support group: that there is life after Erb's.
At the early stages, you also need support from immediate family, which can be offered best by them saying, "he's one of us, and we love him anyway". I know Johan was in severe pain for the first few days of his life because he screamed if you touched him. Within the first week, he had a convulsion, which was a sign of possible brain damage. For the first two years, he was monitored every three months and there was a fear he would have major, major problems. He was two years old before I knew he would be okay. He had speech and language therapy at the Shantalla Clinic in Galway, and he is now perfect intellectually. I was told recently he is among the top of his class; there was a time when all I cared about was that he be able to keep up with his class.
During the two years Johan's progress was being carefully monitored, my mother was dying of breast cancer so I suppose I was so focused on her that I couldn't worry too much about Johan. I just got on with it because you have no choice but to get through it. The maternal instinct just makes you cope - there's no choice. That doesn't mean that you are not totally devastated for a long, long time.
My husband Karel and I know only too well how, on diagnosis, parents feel they have no one turn to for practical advice or with their worries about their baby's future. The support group will provide a network of support, but we'll also work for better recognition and of the nature, causes and proper treatment of the condition.
The Erb's Palsy Association of Ireland is holding an information meeting on March 21 in the Hodson Bay Hotel, Athlone. For further details or to receive a fact- sheet, contact the Erb's support group at (091) 552623