In memory of Archie and Connor. My sons, my warrior twins, Archie and Connor, were 35 weekers – born on 20th February 2018 but born as “floppy babies” as the doctors call it. Archie was not breathing at all, Connor was but with some help from the nurses. They both got rushed off to the NICU ward and I was only able to quickly kiss Connor on his forehead. After waiting over an hour wondering what the hell was going on, I was taken to my recovery room. Once I was there I was trying with all my power to get my feet and legs working so I could go and see them.
My partner, Dan was called to one side by a nurse and she said, “You may want to come and see your son – he is really poorly.” There was no way I was staying in the recovery room. Dan got me a wheelchair and helped me on so we could go see our sons. As we got up there Archie was as purple as anything with about 8 nurses and doctors around him, he was having adrenaline pumped into him along with CPR. No doctors or nurses knew why Archie and Connor were not breathing properly and not moving at all. One doctor said, “this isn’t normal for 35 weekers.” As quick as we knew it, they were on the phone to get us into a more specialised hospital.
When the twins were 4 days old (which was also on my daughters 3rd birthday) they got transferred to Southampton Hospital to have tests and MRIs. I missed my daughter’s birthday which broke my heart as she also needed her mummy and daddy. As we spoke to the main doctor who told us everything they were going to do they also attempted to take Archie off life support to see how he would cope, he needed CPR done almost immediately and although this was an absolute heart breaker to watch, the doctor said this gives him an indicator of how to treat the boys.
They were testing for “common abnormal diseases” such as Prada-willie syndrome and SMA. All came back negative which then meant it was something that was very uncommon. The boys got transferred back to our local hospital where they then did more blood tests to find out they were actually identical twins although they were in separate sacks (apparently a 30% chance this happens) so only one of the twins needed to be sent off to St. George’s to have a muscle biopsy, which was Connor as he seemed to be the weaker one as he was also not breathing on his own at this point and making less movements.
As time went on with us all so clueless to what was wrong we got the horrific news that it was a genetic disorder called myotubular myopathy. Obviously as you shouldn’t, I did lots of google research and was absolutely heart broken. Where do we go from here!?
The nurses got trained on how to support and deal with the twins and they then taught Dan and myself. Our daughter, Olivia, would come and visit her brothers as much as she could and I tried my best to split myself between home life and hospital life as I wanted to keep a normal routine for Olivia.
During the next 2 months the nurses tried a few times to take the boys off of the support machines and Connor took a turn for the worst on 3 occasions where he needed at one point 4 minutes of CPR and adrenaline. Archie managed to do 2 weeks without the tubes but needed a lot of oxygen.
Once the twins were 4 and half months they sadly passed away on the same day – on the 2nd July 2018. They had fought so hard in that 4 and a half months and we are so proud of them for putting up such a fight. We miss them every single day and Olivia always speaks about her brothers. We know they are at peace, tube free and enjoying life with each other and always watching over us.
