Below you will see the heartache we went through seeing our boy in such pain- pain from after the operation where he would not stop crying and would get so red faced and howl, and then the pressure sore he started to get on his chest from the cast which was getting mouldy, full of bacteria and was also heavy on his chest. It started as a small red patch but escalated quickly.  We contacted his specialist in the UK and they advised we have his cast removed immediately, so we went late that very night to the hospital and they removed his cast and did a very naff job at strapping him up. We stopped at the chemist and bought bandages as to strap him securely ourselves as it was important to keep his arm in the same immobile position as it was still a week from the cast being due off. We flew to Leeds a week later for him to be seen and he was given the all clear for us to start his physio again.

His legs you will see gradually improving as they healed. We rub bio oil on them every day as to reduce the puckering and scarring from where the nerves were taken.

There was a lot of pain and suffering in the weeks that followed- we would give Seth Calpol and Nurofen liquid for babies, paracetomol and ibuprofen, round the clock as to keep his pain at bay. Nothing prepares you to see your baby suffer like this. The feelings of upset and anger that arise in you churning your stomach is horrible. We would lay our hands on our boy and beg the Lord for help and healing in these days. It was an especially tough time, but God held our hand and got us through the storm. The Erb’s Palsy Group Facebook page was a huge support in these dark days too, as to have guidance and help when we needed it most from so many others who had been through it all before, made a big difference.

These image are when we were at hospital in Leeds- I slept next to him the night before surgery which took place on the 7th October. Seth was nil by mouth so it was a very hard night and morning as he was not allowed any more milk after midnight, and even water by the morning which you can’t explain to a baby. Seth was 4 months and one day old when he had his nerve graft surgery which lasted 5 very long hours. Seth was in hospital for three nights- Mummy and Daddy slept by his side for the two nights after surgery.

Seeing him so drugged up as he came round was hard, as he had nothing behind his glossy eyes, but at 4am on the first night he woke properly and smiled, and we saw his twinkle back, and knew our boy was okay.

Seth’s cast was made of plaster and went around his head, chest and back as to keep him as immobile as possible for a four week period.

Thanks to Multiflight we flew home safely to Mallorca, without causing him upset, distress or pain by keeping him laid flat in his cast and travel cot.

These photos are the journey we had in between from going home totally clueless, to taking him to surgery. We took him to so many people for help- but alas not a doctor as to get a second opinion, as we trusted that what we had been told, that he would be ‘okay’ soon. We had we even had a diagnosis at this point at all.

The first physio we encountered at 3 weeks old confirmed what we at that stage of spending night after night online looking for answers and had self diagnosed that that our son had Erb’s Palsy- Brachial Paralysis. We then found the Erbs Palsy Group, and from there moved hospitals and had his first official diagnosis at 5 weeks old.

At 4 weeks old Paul went away to work, so I was literally left holding the baby, which I was prepared for, but I certainly was not prepared for hospital visits every evening- I don’t drive- so having to go in a taxi there and back, lugging the car seat in and out all the while being a brand new Mummy, and running our business too. We were not getting home until 8 or 9pm each night.

Seth also suffered from terrible colic from week 4 until week 12 so it was a long time of many sleepless nights, along with all the other normal visits for jabs and check ups, and then physio exercises at home every two hours round the clock. Looking back I don’t know how I did it, and thank God for being my anchor throughout. I could not think too far ahead as it would all overwhelm me too much, and I would feel my chest tighten, so just focused on one day at a time and getting us from morning to night.

Having our quality time together was few and far between and I would switch off and enjoy him as I had read how many other families with a baby with Erb’s Palsy missed that time, I cherished every tender moment we had in that time.

You will see the use of K Tape in many photos, we started this with the sacro cranial and after reading more about it, the physio’s started to use it too. In this whole period between birth and surgery- spanning three months we had two different physio’s, we took him to our pastor for prayer and oil anointing, sacro cranial, a chiropractor, specialist baby physio, acupuncturist, we bought a cold light level laser, and I even bought a rose quartz stone! We tried everything and exhausted every possible option to help him. Every moment in the night he would be sleeping, I would be online searching every possible bit of information, contacting families and educating myself as much as I could.

Physio excercises are the best thing that could and can be done, and so we stopped everything else as it was financially starting to take its toll, and kept focused on this, as well as the use of the laser every so often, the laser described as ‘sunshine on a garden’ made a lot of sense for us, as to help the nerves to nourish and accelerate the healing inside. Little did we know that they were severed completely, and that only be being opened up for an exploratory surgery, would we then know the extent of the damage for repair.

The physio is so important as it keeps his arm supple and stops it from stiffening, and ensures his muscles stay working, and get them strong. We all take our arm for granted, and think just how much you move your own arm doing things without thinking on a daily basis. By our moving his arm often day and night, we keep everything working so that when Seth’s nerves start to take and work, that the rest of his arm is not a heavy limp matter, but will be able to lift as it will have strength. We will need to do his physio like this daily for years to come, and as he gets older, and starts to get some movement, it must continue and he as a teen and adult will need to continue it too.

You will also see many a photo with Runkle, our Burmese cat who knew that something was wrong and would sit with him constantly, his protector and his best friend.

You will see his right arm just there, and also he has a waiters tip: The signs of Erb’s Palsy include loss of sensation in the arm and paralysis and atrophy of the deltoid, biceps, and brachialis muscles.^[8] “The position of the limb, under such conditions, is characteristic: the arm hangs by the side and is rotated medially; the forearm is extended and pronated. The arm cannot be raised from the side; all power of flexion of the elbow is lost, as is also supination of the forearm”.^[6] The resulting biceps damage is the main cause of this classic physical position commonly called “waiter’s tip.” Taken from http://en.wikipedia.org/wiki/Erb’s_palsy

Born 6th June 2013 weighing 3.42 kilos

Our beautiful son was born on Thursday 6th June at 19.52 weighing 3.42 kilos.

He was induced following my being quite ill so was important for my health and his to take him out. He was considered a big baby, and they were prepared for this, but no caeasarean was offered, and there was a moment when they could not find his heartbeat either. They pushed and pushed my stomach from where he was high up- despite not yet dropping, nor clearly being ready. Then a vacuum suction was used- twice- and after pulling at our son’s head further, forceps were used to yank him out of me. A combination of all severed his brachian plexus nerves resulting in his right arm being paralysed. We were so clueless and naive as this was our firstborn we did not know what was ‘normal’ and I even joked to friends how ‘only I could have a forcep delivery’ after. Little did we know or realise until we gained information and understanding about what actually had happened to our son, and what a horrific and traumatic childbirth it actually was.  My 4D images show how he would lift his right arm up all the time to rest on, suck on etc. Makes it all even more heartbreaking to look at. He would punch me non stop throughout pregnancy and we caught it all on the DVD we had at the time I had that scan too.