How does Erb's Palsy effect the parents emotionally?
I sometimes feel a little emotional when mothers talk about their experiences with babies with Erb's Palsy. Nobody wishes a disability upon anyone. Especially a new born baby. Karrina has written a very moving and honest article about her experiences and emotions of being a mother of a baby with Erb's Palsy. Manybe some of you can relate...
The birth and early months
The arrival of my perfect darling little bundle of joy... WTF is this sheet of paper and why has the baby just had an X-ray? Ah well, baby was happy and feeding well, so I will read it later. I’m so high, happy and sore right now.... and sleep.
The pregnancy went well, no real issues apart from measuring a little big. The baby was also breach until week 38, but the consultant hadn’t called us in, so due date came and went. At 8 days post due date I had some twinges, we went in early hours Sunday morning. Hours and hours passed, but by 2pm and after a very rough examination waters were broken and it was all stations go.
After what I thought was a much better birth than my first child, I knew the head was through, the midwifes tone changed and she got really serious. She pushed on my stomach and the pain was so extreme it distracted me from pushing, she commanded my husband to push the red button and drop the back of the bed immediately. I was really confused because I knew the baby's head was out. Within seconds I was completely flat back. I could see my ankles at the side of my head and my stomach being pushed and pushed. I could also see my husbands face had lost all colour and I could hear lots of footsteps in the room. It seemed a very serious atmosphere and all the soft calming conversation and encouragement had stopped. Nobody was communicating to me what was going on. I was the main attraction but had no idea what was happening at the bottom end and the top end nobody seemed to care or include me.
At this point I had no control, I was just aware that something was happening. I could barely breathe in between instructions from the staff. It started to get blurry and then there was an arrival, only an hour before we had discussed that the baby was to be put straight onto me for ‘the golden hour’, my husband would cut the cord and tell me the sex of the baby. The baby was finally out and was taken where I couldn't see. I tried to sit up but I was pushed back down. There was a wall of staff smiling at me stood in front of the lit up little table they put babies on and I could see a circle of people around the baby. I didn’t know at the time but she was having chest compressions. I asked my husband where the baby was and he said ‘over there’ and his voice broke with emotion. I remember looking at the midwives and they said
"He’s over here. We are just checking him over."
There must have been at least eight more people in the room than when I first started in there.
I was too exhausted to do anything more. It turned out HE was actually SHE. Finally after what felt like a lifetime the baby was brought over, breathing and alive, panic over. After a little nap with our new daughter and some tea and toast, a big machine was rolled in and my husband was asked to wear this lead jacket and to hold the baby. She was X-rayed but we weren’t sure why. We asked the staff who carried out the X-ray, but she was reluctant to talk about it. She said that due to a difficult birth and her arm being pulled they needed to check she hadn’t broken her shoulder.
We were completely shocked by what was being said. However the baby seemed fine and happy, so we didn’t panic too much at that point. Anyway hours later we were put in a private room on a ward. My husband left for home (we had a 17 month old at home with Grandad so we were keen for him to get back) I fell asleep as the baby was sleeping. I recall hearing a voice in the room and as I came round to see who it was there was a nurse at the door apologizing for waking me but to tell me that the baby's arm/shoulder was not broken.
"But for some reason the thought of a child that was perfect in the womb that has now been pulled out with so much force that they have stretched, ripped and severed her nerves and have left her partially paralysed, absolutely crippled my heart and eventually my mental state."
The next day we were ready for discharge, as we waited all bundled up and case at the door a midwife popped in to go over a few things with us, along with breast feeding info, bathing, injections, postpartum leaflets etc, she also slipped in an A4 sheet that said "Erbs Palsy- How to handle your baby." I thought what on earth is that, we don’t need that sheet.
Within a week we were back in hospital for a different reason, the baby had an infection in her belly button and we got a call to bring her in immediately as she has a fatal infection. After a silent and tearful drive, a week in hospital being treated for sepsis and utter disbelief that this was happening to our perfect and healthy child she came through and we managed to bring her home again. I remember being sat on the childrens ward whispering to her that her arm didn't matter she just needs to live.
So as the weeks passed we got a call from a physiotherapist. We went on to see her every four weeks or so, she was always really polite and friendly and always tried to be positive with us. About 3 months in we started looking online and finding out about Erb's Palsy. We went through a week or so where we would both look up info and just sit in silence teary eyed until bedtime. We were desperately trying to find that it is ‘curable’, we were so ignorant about it.
As the baby (which we called Seren) began to grow and become more alert and aware of her surroundings it became glaringly obvious to us that she had a completely floppy arm. She could use her hand but it just fell at the side of her. Barely anyone knew, our families thought physio will sort it out in a few weeks, as that is what we were told before we left hospital. As time went on we could see Seren's arm was becoming hard to ignore. It was a dark and hard time. Not only did we have this newborn that wanted feeding constantly, work, home life, a toddler, we could both ignore the issue in the day but come bed time for the children we could barely make eye contact. Our families and friends would start to ask and we didn't know what to say anymore. I didn’t want anyone to use the word disabled, I thought it will cause more emotional and mental harm than what the physicality of a less able arm would.
Eventually Seren got to five months old and the dreaded word we had been avoiding for months was mentioned. Surgery. My mind was going crazy, no matter how strong I thought I was, I couldn’t cope with this. I was in a place I hadn’t known before. I had managed to dodge it two years previous when my mum had died quite suddenly after a short battle with cancer. I dodged it when my father-in-law died nine months later, when my grandparents died the following year and my miscarriage just a few months before I knew we were expecting Seren.
But for some reason the thought of a child that was perfect in the womb that has now been pulled out with so much force that they have stretched, ripped and severed her nerves and have left her partially paralysed, absolutely crippled my heart and eventually my mental state. I ate my way through it. I could barely speak about it without filling up. I was constantly angry and just had no control over my thoughts and emotions for months. I hated the consultant that we never met, the midwife who ripped her out, the family and friends that kept asking about her arm but closed me down when I tried to explain the condition. The friends who had healthy babies and told me Seren looked fine, my husband for not seeming as bothered as me or not wanting to talk about it every night after work. My dad for not asking me about it as much as I wanted him to. My mum for being dead and not being here for me, just everyone, but mostly myself. I hated myself for not coping, not knowing what to do, not knowing anything about it or how her life will turn out. I hated that I did everything right in pregnancy and this happened and there is nothing I can do to change it.
This went on for months. I didn’t attend the baby groups that I did with my first. All my time was spent with the kids and googling anything I could in between hospital appointments.
I felt like I was on a little journey and soon I will be at the end and then I can forget about it. I had no idea this is something we will be dealing with for her whole life. I just couldn’t see any light at the end of the tunnel. I hated that I was wishing away her baby months away so I could see where we end up and know what the outcome is going to be. Not knowing and having no control really caused me more upset than day to day life with an #erbspalsy child. I wanted closure and answers, it felt like grief.
To some people they will think it is really unreasonable and dramatic because I’m lucky to have such a beautiful precious daughter and she is so unbelievably determined. Now I can’t see anything stopping her. But for me, I was holding this innocent child that had a disability inflicted on her and it felt like the biggest deal in the world and more so that nobody understands it.
I truly went through a greiving process which was a black cloud over those early months and I feel that it stole my newborn days. But time and knowledge does change that. I was in complete shock and denial at the beginning. Then I had intense pain and guilt that I should have done more to get her out unharmed, and then the depression set in. I believe now I am in a better place. Talking to people like Matt is like a stitch of hope in my broken heart that Seren's arm doesn’t need to define her life, but might also make her become a super determined and strong person, who like Matt, can inspire others and seek their own peace with #erbs.
So many questions
I don’t have Erb's Palsy, but at the moment it is a bigger part of my life than it is Seren's. She has no idea about it, she doesn’t know any different and she gets on with things. But it drowns me on a weekly basis with worry and anxiety about her future. How many times will she be in theatre? How many times a day do I have to make her cry by performing her physio? Will she be able to go to the toilet in time when she starts nursery? Will she be bullied if she can’t? Will she drive? Will she be self conscious? Will it affect her as deeply as it does me?
I need to know as much about it as possible, so that when she is older, I have the answers for her and I can reassure her when she needs it and show her other people have Erb's and how they have a ‘normal’ life. I do think she will be able to do most or all the things a person without it can, but its how it makes her feel that bothers me the most. Her feelings are something I don’t know if I can change or fix.
As a parent you want to protect your child and you want the very best for them but knowing they have hardship ahead and not knowing the extent is hard. I wish so much that we could swap arms. Sadly after feeling failed by the health service, it's very hard to trust them again with your child to try to put it right. It isn’t really spoken about much and other that our consultant and phsyio department, hardly anyone knows anything about it. It's really sad there isn’t more public knowledge about it, even within the health service.
Being handed a photocopied grainy piece of paper as you leave hospital with your new baby, which basically says, "Hey here's some poorly thought out info to let you know about this thing that is no big deal and will be gone in a few weeks" actually meant; due to a poorly managed pregnancy and birth you now have a disabled child and we aren’t sure what else to say. We hope your body heals okay after what we did and hope you manage to keep your spirits up in the coming months as you guess your way through this and realize what this means.
For me it only meant one thing, a long hard road of post natal depression, days merging into weeks, hours and hours scrolling the internet in tears and intense anger. It was a far cry from the baby rompers, frilly dresses, sleepy breast feeds and beautiful mother and baby bonding I expected and that had with my first. It was the same few shitty, bobbly, babygrows that were the only thing we could dress her in because we couldn't get her arm in most of the clothing in her size, or any other style other than a button front sleep suit which was useless.
Her innoccent little face and her sister watching mummy cry again because they couldn’t wear their matching dresses. Obvioulsy the upset was much deeper than a frilly dress, but these were the daily reminders and little pleasures a new mum has that were gone and
couldn’t be gotten back. Thank you I'd like to thank Karrina for writing such an emotional article. I live with #erbspalsy #brachialplexusinjury so I don't feel the same things that a mother does. I'd love to be a father one day and the thought of something happening to your baby is hard to deal with. If you are in the same position that Karrina was in, please know that you are not alone. Know that your baby will be awesome. People with Erb's Palsy are Empowered, Resilient, Brave and Strong. They may do things a little differently, but they will be stronger for it.
Much love x