In that one sentence my life was destined to never be the same again. My partner and I had been together less than a year and engaged for a little over a month. Here we were listening to the woman scanning my partner telling us that we were expecting twins. I had a sneaky suspicion that it was going to be twins, still though I felt shocked when it was confirmed to be the case. Cue all the emotions of being told such wonderful and equally scary news! It was my nieces birthday, so we went down to see her and I told my family the news. Cue even more excitement. It just couldn’t sink in and I just kept laughing because I was so excited, yet oh so nervous at the same time.
About a month or so later, we went for an early scan where it was confirmed to us that we were expecting two boys. Cue me freaking out because I have serious issues with interpersonal relationships with males. How was I ever going to manage? As we got out of the building, our minds quickly moved to the subject of names. I’m a very traditional person and the letter J runs in my family history on the male side, so their names simply had to begin with J. We were thinking about this as time went on and we finally settled on Joshua Stephen and Jacob Arnold. Stephen was my partners Dads name and it was as a tribute to him as he passed away a few years previous. The same for Arnold too, except this was my Grandad’s name. The only male I’ve ever got close to emotionally.
My partner had a pretty tough pregnancy as you can imagine carrying two boys. She was sick for 5 months and had the most horrible bout of mouth ulcers amongst other things. It’s fair to say she really suffered with her pregnancy… And there was nothing I or anyone could do to help.
It was the Thursday before the boys arrival and she was admitted into hospital after a scan had revealed the twin we were going to call Joshua wasn’t growing sufficiently so she had to be closely monitored. I never left her side. On the Friday she had another scan and it was said that the other twin wasn’t growing either. The consultant came into our room at the hospital that evening and asked where my partner were, I said she was in the shower and she just blurted out that she’s going to deliver the babies tomorrow. OH MY GOD. I thought. We were going to meet our boys. My partner was just under 31 weeks pregnant. We were taken through what probably will happen in that both boys would be taken to NICU after birth for them to grow bigger and stronger and hopefully ready for home.
The next morning seemed to take forever to come around, but when it was there, everything happened so fast. We were in the delivery theatre. There were so many people in there. Doctors, nurses etc. It was really weird, but then came the point when the caesarean started. My partner and I was just looking at each other, half excited and half nervous. Our first baby boy came out but wasn’t crying, in my heart I knew there was something wrong, but I chose to ignore it as I thought I could just be wrong and everything was okay. Shortly after our second baby boy was born, I heard a faint cry. Fast forward 20 minutes and a neonatologist came over to us and said “sorry we tried everything”, those words will stay with me until I die. Our first born, our eldest, my baby boy had unfortunately passed away. Our other baby boy fared much better and was sent straight to NICU. All the while Rebecca was recovering from her caesarean. The neonatologist came to us and asked the baby’s name. We previously had agreed that our first born would be Joshua, however we named him Jacob. The reason for this is because I didn’t want my partner to see her Dads name on a gravestone again. So our angel now had his name, Jacob Arnold.
As the day wore on, I had informed our family and friends, yet I shed no tears. What was wrong with me? I had no clue what was going on. Rebecca was in and out of sleep. One of our boys grew wings and one was fighting for his life elsewhere in the hospital. The doctor came to see us and told us our angel had next to no top layer of his skin and he looked as though he had something called Edwards Syndrome. Once the doctor had left, I googled this condition and quickly learnt that babies don’t survive for very long with it. This immediately helped me get to the acceptance stage of my grief and focus on my partner and our other baby boy Joshua.
The doctor came back and told us that it looked as though Joshua had something called EB because his skin was very raw and blistered as well as an oesophageal defect in that it wasn’t connected to his stomach. The plan was for us to be transferred to Birmingham to the specialist EB clinic, however Saint Mary’s in Manchester said to send Joshua there. At first my partner and I was like, “why can’t he stay here?” The answer was simple, he needed surgery to fix his oesophagus.
So we were sent unceremoniously to Manchester, not knowing what to expect. Our son couldn’t swallow and he had a very serious skin condition… Or so everyone thought. Over the next 5 months, we stayed in Manchester at the Ronald McDonald House next to the hospital. Joshua’s skin began to improve greatly and the oesophageal problem was rectified. It was thought that he had something called Oesophageal Atresia where the oesophagus isn’t connected to the stomach. However it was determined that the skin on the outside was the same on the inside of the oesophagus. His skin condition didn’t turn out to be EB. It is something called Erosive Vesicular Dermatosis. There have only been 29 reported cases worldwide since the first diagnosis in 1985. It has effected each baby differently and with the oesophageal problem combined, Joshua is the ONLY reported case. So he is truly one of a kind.
Over the last year since we’ve had him home, we have had to work really hard in getting him to eat normally. He has a gastrostomy which was used three times during a 24 hour period. Now it’s used only once and Joshua has three meals a day. We’ve had loads of reflux and Joshua is on a lot of medication to stop that. However he’s gone from strength to strength and he’s kept his Mummy and Daddy very occupied. To think one of the consultants in Manchester gave him a ZERO percent chance of survival as well. Yes, a ZERO percent chance. Haha – in your face Consultant! We’ve had a few admissions into hospital since he’s been home but we’ve (touch wood) had a good spell at home since Easter. Hope that continues! We’ve been looking at nurseries as well recently. Where did my little boy go? My little 3lb 2oz boy! He’s growing up and catching up developmentally so FAST. Daddy doesn’t like that Joshua!
This was the most bittersweet experience of my life. I cannot put into words how much turmoil I’ve gone through since all this started back on 21st June 2014. This year, on the boys birthday, we had Joshua christened Joshua Stephen Jacob. We added the Jacob onto his name to make it slightly easier to explain when he’s older about his angel brother. It was also Father’s Day, which was very hard. As will Christmas later this month.
Jacob’s headstone was finally laid this afternoon and this very well be my reasoning behind posting my story. It could be a whole lot longer, but that’s for another time when I’m less tired. I’m so happy that’s been done before Christmas and now I can go and talk to him and spend some time with him, rather than a patch of mud and grass.
I apologise for the length of this post, however I’ve been wanting to let it all out for almost a year.
Take care all…
Peace, love, empathy.