As I continue this month in the attitude of gratitude I must start from the beginning. My thankful heart is overjoyed to share with you my own experience with the Erb’s Palsy Group UK and CIO that I first came across 20 years ago, after 1 phone call I became a member immediately.
September 1999 was the time I gave birth to my firstborn, a beautiful bouncing baby girl that went from the feelings of skipping through the meadows to await your bundle of joy and within moments became a living traumatic nightmare. Nothing could have prepared me for what I went through, nothing. At that time in my life, I was a faithful churchgoer, and I was heavily pregnant, a minister prayed for me and said, ‘everything will be ok’. It was not ok, in fact, it was worst because not only did I have a horrific birthing experience, it followed lifelong consequences. I used to have a high pain threshold and it all left me in that moment of delivery, then after pushing and pushing and it went on and on and things just did not go to plan.
There was so much happening all one time the paediatrician coming in and hearing a crack as I can feel hands inside to help birth my lifeless blue baby. She was administrated breathing support but, in my mind, as I looked at her all I could do was call her name repeatedly. Knowing her name meant life in Swahili. Then a cough came followed by a scream, but it was not the usual baby cry it was a definite scream, she was in pain (I realize that now and it still breaks my heart). As soon as my baby was born I’m being told my new born has shoulder dystocia, I had no idea what that was, all I knew at the time is my baby is being taken away to the NICU for observation. I was in physical and emotional pain and I just could not keep up with what was being said.
So many medical things were going over my head because I could not quite fully grasp what had happened, all I knew after a few days of being at hospital I’m going home with a disabled baby, none of this ever came up in the prenatal classes so I was always feeling 10 steps behind. I took my daughter to all her medical appointments and physiotherapy from 10 days old. I was told all the nerves were damaged in her left shoulder and it should heal in 6 weeks. 6 weeks later, no movement. It took 6 months before my daughter moved her fingers, I was so happy and thought she is going to fine, wrong. We continued with physiotherapy and at this time my daughter is over a year old and has what was described as a waiter’s tip. I had a happy, but very tearful baby and she cried so much but, in my ignorance, didn’t know she was in pain as I’d soothe her and gave her lots of breast milk that seemed to help.
On this day, in hindsight, the angels were certainly on my shoulder because we are now well over a year of having physiotherapy and no progress. I was naive and fully trusted the medical professionals because their qualified, I doubted myself and my mothering instincts because it was all new to me but on this day I was sitting in the physiotherapy department and on the notice board covered with lots of different posters and leaflets overlapping each other. One of the posters grabbed my attention, I just saw Palsy, I went up and pushed it back and it said Erb’s Palsy Group. I read the information as it is the same condition my daughter has but it was a support group for parents. I was happy and angry at the same time because I never knew about this group. I admit when I walked into the appointment I was vexed (extremely mad) and my tone was off when I greeted the physiotherapist. We were greeted with a pleasant smile which quickly changed when I mentioned seeing the Erb’s Palsy Group. I asked why it was never mentioned, the more the physiotherapist talked the more upset I got.
As soon as the session was over, I got on the phone and called the number and I spoke to a tender-hearted and knowledgeable woman called Karen Hillyer. Karen listened to me, guided me, advised me and I was so impressed with the information pouring from her that I broke down in tears and even sobbing, helped me to write a letter to my GP for my daughter to be referred to (RNOH) Royal National Orthopaedic Hospital. I was given the support I desperately needed and became a member in 2000. I have attended events with my children for them to meet other Erb’s children as at times you feel your child is the only one that way. It is not true because we realised many children here and across the world have this condition due to traumatic births.
The Erb’s Palsy Group have helped us so much and with tears in my eyes I don’t know where we would have been because the information was never shared with me, I had to find it myself and I’m so glad I did. There is still so much work to do and it is Erb’s Palsy Awareness week, and this is my contribution to bringing some attention to the charity. As a charity, they rely on our help and if you would like to help you can donate here.
Tonight, I will be speaking with Jackie Dewdney Committee member, speaking on behalf of the charity at 8pm. First a little bit about Jackie who is a mother to her 16-year-old son who is studying level 3 advanced media at college. Her son has bilateral Erb’s, his left is not too severely affected, but his right has lost about 50% movement. Jackie has been on the board of trustees for the Erb’s Palsy Group for 11 years and so much has happened. Jackie has learnt to live with the trauma she suffered when she had her son, Jackie has spoken to midwives qualified and in training, physiotherapists, and occupational therapists about Erb’s around the country.
One such talk led to Jackie and Karen to being asked to join the big baby trial. The trial is being undertaken by Warwick CTU clinical trials unit and is looking into reducing the rates of shoulder dystocia and the trauma associated with it. The trial consists of asking mums to be with babies over the 90th centile at 35 weeks if they are prepared to be put into a trial to decide if inducing at 38 weeks reduces the risk of shoulder dystocia or if leaving mum to go into natural labour reduces the risk. Jackie has the privilege of working alongside a fantastic team of people mainly Dr’s in the profession and professors. Even if the trial only helps a handful of mums it will be worth it. They do have the backing of the NHS for the trial.
Jackie loves being a trustee of our Erb’s Family as she can help other mums who have gone through similar events as she and I both did and even though we can’t make it right they can be there as a listening ear and giving out mum advice.
Tonight is going to be an interesting discussion, join us as we bring awareness about Erb’s Palsy and please visit their website
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