A Day Living With Erb’s Palsy
While writing this, I am very conscious that Erb’s Palsy is not the same for any two people. I hasten to say that anybody can or cannot achieve a particular goal or perform a certain task because everyone’s case is different. Not only is each case of
Erb’s physically different but it affects the individual in different ways emotionally also. That said, what I can do is relate to you my experiences as someone who has lived with Erb’s. I was categorised as being in the ten per cent worst affected cases of Erb’s with severe nerve damage in my left arm.
First, I will address the parents of children with Erb’s. The good news is that Erb’s is a lesser burden for your child to live with than it is for you. The bad news is the same. The worry that comes with any physical disability is hard to overcome as a parent, however, there are many things that you can do (much more useful things than worrying) to help. The two most important are very simple: 1) Don’t do anything for him that he can do for himself (or herself); 2) Massage and stretch the arm as much as possible. My arm would not be as normal as it is, if it wasn’t for my mother massaging my arm and stretching it while I was young.
Living with Erb’s is like... living. I have never experienced anything different so I have nothing to compare it to. Sure there are minor tasks that are more difficult, but there is truth in the cliché; necessity is the mother of invention. I have always been able to figure out a way of doing anything I wanted to. I played tin-whistle using four fingers of my right hand and two of my left. I can drive a manual car changing gear with my left hand successfully. Never assume that someone with one weaker arm is unable to do anything. You run the risk of insulting that person. I know I would be insulted if I was “protected” from something or excluded from an activity because of my arm. With a little determination, a child affected by Erb’s will find a way to do ANYTHING his/her “non-affected” peers can do; kayaking, playing football, rugby or other sports.
Sure, I can’t catch a ball above my head as confidently as others, or do the same amount of press ups (though I do some) in training, but I am still playing on two teams and training the youth team.
There will be day to day tasks that require some extra thought (or work) such as carrying glasses, cutting meat, cutting fingernails, peeling potatoes and any other activity that requires dextrous hands, but I can still do these things even if it takes a little extra time. Please don’t help a child with Erb’s to tie shoelaces, fasten buttons (I could do this one-handed when I was three), carry things, dress themselves even if they seem to be having a little difficulty at first.
People very often think that children with Erb’s cannot do anything that needs two hands. Rubbish. I can type, eat dinner (despite the fact that my left arm will not reach my mouth), play football, walk my dogs, dance with my wife. I just asked my wife, Lorraine for other examples of things I could do and she replied, “Huh? You can do everything.” I guess that sums it up.
Why focus on what I can’t do? While writing this, I realise how much I have achieved. I have travelled the world, I am working as a primary school teacher, I got married last summer, I built a house, my wife is expecting a baby next week (probably born by the time you read this), and I feel like the luckiest person in the world and though I realise this entire article seems like I am blowing my trumpet, I don’t mind because I am merely highlighting the importance of staying positive. There will be difficult days, and annoying people acting in a condescending manner, but life doesn’t have to end. Be happy, if you don’t make a big deal of it, neither will the child and that is what everyone wants.
By founder and parent Mary Verbruggen
Eight years ago I went into labour and, as I was young and healthy, my problems extended to the colour of the blanket that would be used to cover my new baby in a few hours - would it be pink or blue?
What happened during those subsequent hours was to change my life forever. Johan had a very hard struggle to be born.
He was 11Ibs and a month premature. His head was delivered but his shoulders got stuck behind my pubic bone so there was a considerable effort involved in delivering him.
Johan was immediately taken to the special premature baby unit after being revived and so started our journey on the road of discovery concerning Erb's Palsy.
The feeling of isolation in those early days, no years, will never leave me. Karel and I as a couple felt so alone. Nobody else seemed to have this problem and we were never put in contact with anybody else as information was very sketchy.
The impression most people had was that it was only an arm and I suppose in all fairness to hospital staff, considering other conditions they have to deal with, Erb's may seem pretty insignificant.
None the less parents are devastated. One arm is not insignificant, particularly if it is your dominant arm - try doing a days work with your dominant arm tied behind your back.
Our children also have the added problem that they have to compete with 'normal children' academically and in the workplace and in their future will probably experience prejudice.
In July 1997, I experienced an unusual day when a friend took my three children away for the whole day. Unused to having nothing to do, I decided to contact the three or four Irish parents that I knew of through the English Erb's Palsy
Group. In just two days this had grown to a contact group of 28.
This was the first time in seven years that I did not feel so alone. Every parent I rang was crying out for somebody to talk to and most of them couldn't believe that they were not alone. Yet the incidence of Erb's is unfortunately rising as the birth weight of babies is rising steadily in Ireland, and the female pelvic anatomy remains the same. My new friends and I agreed it was the appropriate time to put in place a support group for parents of future Erb's Palsy children. As a result I held and open day in the Hodson Bay Hotel in Athlone, Ireland, and we formed a committee of ten. Our first meeting was in February 1998.
We decided our two main aims for 1998/1999 would be to publish a comprehensive fact sheet about the condition and officially launch the group to spread the word across Ireland and possibly get in contact with more parents. Erbs Palsy Association of Ireland, was officially launched on November 30, 1998, by our patron Mary Banotti MEP at Dublin's European Parliament office.
I am delighted that we have achieved the goals we set ourselves so far. We hope with a little support from everybody that this good work will continue. I would personally like to thank my committee for its determination and hard work and for helping to achieve what Karel and I used to dream about throughout the first seven years of our Johan's life.
We present this story to represent the reality of bad news brought about by Erbs Palsy followed by the positives that human resiliance brings to us all.
Fiachra was born in 1994 in Louth County Hospital Dundalk. He was a large baby at 10lbs 5 ozs ( 4.8 kgs). His birth was extremely difficult and traumatic and we were totally unprepared for such an outcome. Following his birth he had to have immediate and urgent resuscitation treatment. Our ignorance as to what had happened was, we later discovered, not unique in the experience of parents of Erbs Palsy children. So severe were Fiachra’s injuries that he was transferred within a matter of a couple of hours to the more specialised facilities available in Our Lady of Lourdes Hospital in Drogheda.
After five days there the paediatrician informed us that he needed further specialist care in Crumlin hospital in Dublin where he was transferred urgently. He had an MRI scan in Blackrock Clinic which confirmed he had Erbs Palsy and we were informed for the first time in detail as to what was wrong with him. The outcome of his assessment there was that he had two nerves avulsed from his spinal cord, another two torn and the Phrenic nerve had been severed also. The consequence of the latter injury was that he could not breathe unaided and after 6 weeks he had surgery in Crumlin hospital to help him cope with that problem. The surgery was very successful and Fiachra has not had any breathing problems since the surgery.
On leaving hospital we were told that Fiachra’s arm would never be of any use to him and that nothing could be done for him in Ireland. By chance we saw a segment of a programme on UK GMTV focusing on the English Support Group. We
contacted Karen Hillyard and she gave us wonderful assistance and information. At least we now knew there were other possibilities and other children with Erbs Palsy.
At six months Rolfe Birch performed nerve surgery on Fiachra in Great Ormond St. Hospital and it was clear that Fiachra was in the worst category of Erbs Palsy injuries. Since then Fiachra has had some improvement in the general use of his left arm, though his wrist and hand are generally malfunctioning. He may have further surgery involving transfer of muscles and tendons in his wrist to help his hand function.
We were amongst the founding members of the Association when Mary Verbruggen founded it in 1997. Without Mary’s drive and commitment nothing would have improved really for parents of Erbs Palsy children in Ireland. The Association has provided excellent information for parents since its foundation and it has worked in collaboration with the best medical professionals in Ireland and abroad to try to ensure that there should be a professional assessment and treatment plan for each child born with this condition.
Fiachra has coped very well with his condition. He has had to put up with quite a bit of frustration and discomfort that a child without the condition does not have to go through. He is very determined and we have encouraged this attitude but we have not allowed his condition to be an excuse for anything. His friends are very supportive of him and he leads a normal active life like any other young boy, within the limits of his abilities.
Fiachra’s national school days have been very happy and we have spoken openly to his teachers about his condition. We would feel that we would not be doing him any favours by trying to hide his condition or by trying to exaggerate it. We want him to grow into an independent, balanced, mature adult. His earning capacity in adult life is a concern for us because of the extent of his injuries. We will need to consider this carefully and see where his talents lie. We do not have any fears that he will not be able to cope with adult life but we will have to look at his options sensibly and he will have to do the same. Nevertheless, he will require more attention and research in choosing a livelihood than for a child without the condition.
We still keep looking for the latest information on developments in Erbs Palsy treatment and we never lose hope that one day his condition may be improved. We wait, in hope. Don’t ever give up.