Our son Seth Zachariah Murphy was born on the 6th June 2013 at a private hospital in Palma de Mallorca, Spain. Due to the malpractice of the delivery doctor, Seth was pulled by his neck with such force he has a life long disability by the name Erb’s Palsy.
This is a birth injury, and not a birth defect. His arm is paralysed and although he has has undergone a nerve graft surgery as to take nerves from his legs as to fix where his brachial plexus nerves were severed, this was done in order to give him the best possible chance of movement, and when it does his come over the next two years, it will be slow and limited.
Here is Seth’s story of how it all came to be, told by myself, his Mummy.
Please follow his progress by way of the blog on this site and donations are always very gratefully received as we continue to build a fund for his care now and long term.
We chose to go private as to ensure that we had the very best possible care and attention throughout my pregnancy and delivery of our son.
I had suffered with terrible migraines through pregnancy which became much worse towards the final weeks. At 34 weeks I went into early labour which resulted in my being admitted to a local state hospital which had a specialist neo-natal unit. I was given steroid injections into my belly for Seth as to mature his lungs and prepare him to be able breathe, should he come early. I was given medication as to stop the contractions and they eased within a few days and I was released home. We had a similar false start a few weeks later, but again Seth was just keeping us on our toes. Our obstetrician had told us that since the steroids, Seth was around a week bigger than he should have been, our boy was growing fast and we were told ‘big baby’ many a time. We were concerned as if he had come before 37 weeks, we would have had to have him delivered in the state hospital and not by our own obstetrician that we had come to know so well.
As week 37 passed, I was getting increasingly worse with severe vomiting, consistent migraines and very limited sleep. It was upon a routine trip to the obstetrician that I was vomiting in his office that he felt more concerned about me and if I progressively got worse that it could in turn become a danger to our boy. Seth was by now big enough to not be considered premature.
We were booked in for two days later, Thursday 6th June.
I remember feeling very anxious, and had done a little research online about inductions, pros and cons, and oxytocin, the drug used as to induce the contractions and in turn, labour. There had been a few questions about the drug, but everything read was mainly positive and that in this day and age it was all very normal and safe. Our obstetrician completely assured us that it would be exactly like any other labour and that myself and Seth were safe. We put our trust in him, and our life’s in his hands.
We arrived at the hospital at 8am and I was swiftly taken from our private room, down to the delivery theatre where Paul was asked to go outside. You have to remember that we do not speak fluent Spanish, but enough to be able to get by. Everyone around was Spanish so for me to be left alone at this time was very nerve racking. They came to get me hooked up to the oxytoxin and couldn’t find my vein, so it took three attempts to get the needle in and things running as they should be. Paul was brought in and our obstetrician came to say hello and that he would be checking back later as I start to dilate.
The pain was very severe very fast and by 11am I asked for an epidural. Paul was asked to leave again when this was done. It took two attempts to insert the long needle, I was feeling quite traumatised by the time Paul was back but as the epidural kicked in, any upset and nervousness was then soon alleviated. My waters were broken and Seth’s heart rate was being monitored closely.
At 4pm the ‘matrona’ or midwife, checked me and I was 4cm dilated, she stated that he was ‘mas arriba’ and therefore ‘too high’. He had not dropped as yet.
At 7pm she checked me again, and declared that I was 10cm, but still too high. At 7.25pm our obstetrician came in and said he was going to take Seth out, despite the matrona saying he was not yet ready.
We knew no different and just trusted in our obstetrician. The next half an hour, looking back at it now was very traumatic, although we did not know it at the time, being our first baby.
I could not feel any contractions, so when asked to push found it very hard to do so as the epidural was taking away all the feeling. There were two midwifes or nurses pushing down hard on my stomach to push Seth down, at this time I remember having a moment of wondering if this was normal or not. My legs were pulled so far back in stirrups and I had both woman then pulling them up and back further to me. Paul was by my side near my head for support and I had my music on my iPod playing in the background as to give me something to focus on. I was pushing and pushing. The obstetrician then used a vacuum extraction as to pull Seth out, he tried this twice and the noise and to watch him doing this to our son’s head was upsetting. An almighty sucking noise followed by a pull and release which very much contributed to our son’s injury. This part of my deliver and the pushing of Seth through my stomach have been omitted from my official medical records which speaks volumes.
Around this time, the heart rate monitor machine stopped, and they could not find our son’s heartbeat, what seemed like an eternity passed while he searched for it and nothing was said when we asked what was going on. He spoke only in Spanish and to the every growing number of medical staff in the room, shortly the head midwife came with an ultrasound and she found Seth’s heartbeat. We do not know to this day if his heart stopped or they merely could not find it for that time. Again, this information has disappeared also.
The obstetrician then used to forceps as to take our boy out finally, but not so safely. The combination of using the vacuum twice and then forceps meant that he pulled with such strength he broke the nerves that make up the brachial plexus, meaning our son was left with a paralysed right arm upon delivery into my arms. Our medical report does state that there was a ‘loud snap’ when he was taken out, this could have been his nerves being snapped or it could have been his clavicle breaking. Either way, we were told nothing at all. Our son was given to me for a moment to hold in my arms and Paul observed he was very blue. They took him away for five minutes as to check him over and then he was brought back. At no stage were we told that anything was wrong with his arm.
Seth was born at 19.52 weighing 3.42 kilos/ 7lb 53oz. Not such a big baby at all.
I held our beautiful baby boy in our arms and he was quietly absorbing the faces of us, his parents as we cried tears of joy. Meanwhile our obstetrician stitched me up from performing a episiotomy and was cracking jokes and being nice to us, whilst knowing exactly what had just happened in his hands.
When back in our room for the evening and having Seth latched to my breast to feed, I noticed that his arm was completely limp. His other was waving around strongly and the other, just nothing. Our obstetrician came in to visit and we pointed this out to us and said it was fine and merely stunned from the birth and that in would sort itself out.
The next day we had a paediatrician come in who took our son away to check him over, again we were told that his arm was fine and that it was merely sleeping/ numb and would be okay within a few days. We stayed two days at the hospital and then were discharged, still with our son’s arm being completely limp and no diagnosis given, we were sent home with no advice about anything even how to hold him correctly. Looking back at videos from then, his arm just hung there, when it should have been supported, and physio should have been in place immediately.
In those first few weeks we were clueless, and were desperately searching for help and answers. We took him to a sacro cranial, a chiropractor and also introduced him to acupuncture but none of which made any noticeable difference. We had taken on a midwife as to have for additional support since I first went into early labour but no one in our path spotted that Seth had Erb’s Palsy and that we should get immediate help and seek a diagnosis and second opinion. We did exhaust ever possible other option as to get help. We eventually thanks to many an internet search came to this conclusion ourselves and self diagnosed Seth at 3 weeks of age. We have since requested my medical history and have seen that the word Brachial was written all over it, so they very much knew of what had happened, as well as the fact that there was a large ‘snap’ when he was taken out.
We pushed for him to have physio at the hospital where he was born as it had not been offered and it was with the pyshiotherapist there, that our first albeit unofficial diagnosis was given, of Brachial Paralysis, Erb’s Palsy. This matched our own thoughts and then made it easier to search and then find the Erb’s Palsy UK Group page on Facebook. It was after posting here that within minutes a number of families reached out, and then Karen the Chairman got in touch directly to ask for my number. I gave it to her and when she rang me and started talking, the relief and release was instant with tears running down my face. To finally speak to someone who understood what we were going through and be able to help us. She sent us a referral form for Leeds General Children’s Hospital, the best UK hospital with Erb’s Palsy specialists and surgeons. We took this to our physio who filled it out and faxed it over to the hospital in Leeds straight away.
Seth’s physio started at 3 weeks old, and after finding the Erb’s Palsy Group we learnt a routine of physio exercises to do with him, every nappy change, on average every two hours. We were disciplined with this as we are today. By doing these exercises we keep his arm supple, and muscles active and help them to get strong. Without them his muscles would deteriorate. At this early stage we did not know whether his brachial plexus nerves had been stretched or were severed, we were doing as much research as possible as to educate ourselves better.
At 4 weeks old, Paul went away to work for two months so not only was I looking after a new born, but was our every day at the hospital, as well as taking him for other sessions and doing his physio exercises round the clock. It was a tough time, while also running our business and keeping it moving forward. As a new mother, I lost a lot of quality bonding time with my son, I managed to keep up the breast feeding for two months but had to finish as I simply could not fit it in anymore. Seth was out and about being handled and held by others from such an early age, when most babies are snug at home having solid time at home with Mummy. I feel sad to have been robbed of this time, but we managed everything simply one day at a time as to not get too overwhelmed.
By 5 weeks old, I felt that nothing was happening with the physio at the hospital, and the paedriatian was very distant with us. I had seen the obstetrician once since giving birth as to check on my stitches, when we were still clueless about what had happened, and felt very odd to go back knowing what we now knew.
I changed hospitals and within five minutes Seth was diagnosed for the first time, and officially with Brachial Paralysis. They were hopeful that he would make a good recovery, but like most hospitals in the world, are not educated well on Erb’s Palsy so are not in a place to give anything other than false and incorrect hope that everything will just be ‘alright’. This is not true, and I am grateful that we as parents did not settle with this information but by carried on searching for answers and wanting to find out how to best help our boy.
Our date at Leeds to see the specialist was given for Seth at three months old, as by this time they will be able to see if surgery is needed. If the nerves had been just stretched because the pulling was not so strong, then in time the arm could show movement again as it heals, but physio would still be necessary for life. Once diagnosed with Erb’s Palsy, Brachial Paralysis, the child has it for life.
We ventured to Leeds ready for answers that we had not yet been given and for the first time meet a specialist in this not so rare birth injury. We remained hopeful that the little movement he did have, in his shoulder and arm indicated that surgery would not be necessary. Karen from the Erb’s Palsy Group travelled to meet us at the hospital and after an assessment, carried out with the Toronto Scoring System, it was clear that Seth would need surgery. A date was given for the following month as it was crucial to intervene immediately as to get better results while so young. Paul had only flown back for the Leeds visit so he went back to work and Seth and I ventured back home. It was a busy and tiring 24 hours and by the time we returned home, felt both exhausted and floored with the news of his impending surgery. It hit home the enormity of his injury and that our son was actually disabled. The realisation that we had been in denial for so long, hoping and praying that his arm would be okay, and that we could then share with everyone what had happened, but all was okay again, had gone.
I decided to publicly share what was happening, which was a bold and brave move at a very scary time. We needed help, and I realised that is was okay to ask for it, looking back it also helped to move me into the next stage by speaking publicly about it all. I set up a fundraising page as to help us with our ever mounting costs, and also to get help to fly Seth home to Mallorca after his operation. This also led to the next stage of grieving to then kick in, anger, which developed after feelings were stirred as we felt that those we had exposed him to in the early stages should have most definitely advised us better as new parents and picked up that something was very wrong with our son.
We have since moved on to the acceptance stage, but have had to go through the other stages as to realise and accept that we truly did do everything we could in those first months and that, as surgery showed, his nerves were severed so no amount of doing anything else could have fixed or changed that. It was a very tough time on myself as a new mother dealing without my husband, all our closest friends do not live in Mallorca and we do not have any other family. To do daily trips to the hospital and physio round the clock, as well as all the other visits for other options to try and make anything work, meant that I felt very robbed of my bonding time with my son. I breast fed as long as I could which ended up being around 8 weeks. I longed to do more but my daily schedule meant it was taking it’s toll and just not physically viable as he needed more as time went on by.
Our son was perfectly formed and healthy in every way, and solely at the hands of the man delivering him, did his arm be injured to such extent that he can not move it.
Seth had his nerve graft surgery on Monday 7th October in Leeds, the operation took five hours and was very difficult as the waiting was horrendous. It was initially just an exploratory surgery as to see what was going on inside and see the state of his nerves, but that only once open they would know precisely what was going on.
Once he had been put to sleep, Paul went with Seth into the pre-operating room for them to put the gas on him and for his body to go limp and to sleep. This was the way it was described to happen, and I could not bear to see or hold him like this, I had been so strong for so long, and now was the time to let go and let him take some of the weight of the situation. He was now finished being away with work, so I could finally have the load shared. The waiting was horrific and something we will never forget, as the clocked ticked on by the longer he was on the table, the more serious the extent of his injury. The last time we put our boy into medical hands he was injured so dealing with that, along with the having him be put to sleep and have a scalpel cut into his precious new skin and do what they needed to do was probably one of the hardest things. We could only buy put our trust in God and be faithful that He was present in every intricate step the surgeons had to take to repair the damage, so in turn His healing could begin.
After five long hours, we were called through and our beautiful boy was in a plaster cast that wrapped around his body and head as to ensure he did not move his arm at all. He was still sound asleep from the anaesthetic and it was seeing this that the realisation kicked in for Paul of the enormity and seriousness of it all. My strong rock and husband being in pieces with tears rolling down his face, and my son laid there after such a long hard surgery, shattered my heart and world.
It took one man to injure our boy and a whole team to fix it.
The news came from our specialist and surgeon that they found three nerves severed completely. C5, C6 and then the second half of the C5 nerve which operates the deltoid and shoulder flexion muscles. They took the sural nerve in its entirety from the back of each of his legs, so he has scars now from top to bottom of each calf. This nerve is not greatly missed, as it provides a feeling and sensation to a small part of his feet. They put the nerves they grafted into place on each severed nerve and now all is together inside once more. We are so very thankful for the skill, talent and care that the team at Leeds and Dr. Grainne Bourke delivered to our precious boy.
Thanks to Multiflight, we had a private plane trip donated as to safely get him back home without any movement or added stress. We were able to board with him and get off and home within a few hours.
Seth had to stay in his plaster cast for four weeks, which was very difficult, especially in warm Mallorca, he was both frustrated by being so restricted and also very smelly by the end of it. We were all very happy to have it off.
We have been told that it will take 12-18 months for any movement to start to come as it takes time for the nerves to take and grow, but we are hopeful and continue to pray that we will see it much sooner. Every day is now a step closer to getting his movement again.
Seth will have his Erb’s Palsy for life, it does not just go away, he will have to do his physio for the rest of his life when older, and learn new ways to do things at each new step we take. We will ensure he can do everything and so much more than any other child. He is one amazing determined and strong boy, and with us and God behind him, each and every step of the way, there is absolutely nothing he won’t achieve.
The support of Karen at the Erb’s Palsy Group UK, Leeds General Hospital, our physio here in Mallorca and Clinica Rotger has been tremendous. The support group and families on it have become friends and a real lifeline for us as they are the only ones who truly understand what we go through each day, and to learn from others on what worked for their children and more has been invaluable.
We know that it will take time, and we trust in God to accelerate and heal him. Our faith is stronger than ever now as He has been our rock throughout this difficult journey but know that He has a very special plan for Seth’s life and that all of this will one day be a testament to that. ♥