On the 20th September at 11.53pm our beautiful little boy arrived into the world. I was absolutely besotted with him, the pain from labour and my failed VBAC didn’t matter anymore, because I was holding my gorgeous little boy. I didn’t want to take my eyes of him for a second and neither did his dad, we were both so relieved he arrived here safe and sound. After seeing his beautiful little face, we knew the name we had picked out suited him, our son was now August Joseph.

My husband kissed us both goodbye as we were moved to the postnatal ward to recover from my caesarean section. Due to the current coronavirus restrictions, there are no visitors allowed on the postnatal ward, but I thought to myself that doesn’t matter, we will be home soon enough.

The morning of the 22nd, I woke to find August sweating, so I whipped off his blanket and buzzed a midwife. She took his temperature; it was low. I thought “this cant be right, how can he sweat and be cold at the same time”. Before I knew it, doctors came from the Neonatal unit to run a few tests, I was left for 20 minutes without him, it felt like time stood still. When the doctors returned It was not the news I wanted to hear, they wanted to transfer him to the Neonatal department to run further tests as they did not know what was wrong with him. I went with August - it was the furthest I’d walked since the c-section, I no longer cared about myself I just wanted to be with my son to make sure he was safe.

I stood and watched as they moved him into an incubator and started attaching wires to monitor him (I felt useless, I just wanted to hold my son and tell him everything was going to be ok). Due to the tight restrictions, I was only allowed to stay with August for 2 hours a day. I did not want to leave his side. Looking back, they should have had to drag me out of that room, but I went knowing he was in safe hands and the doctors would look after him.

I was moved to a private room back on the postnatal ward, I remember thinking “how can I just sit in a room whilst my son was poorly”. I started pumping breastmilk to send down to him, it was the only thing that was keeping me going. It wasn’t until late that evening when doctors came to tell me that August was getting worse and that they still didn’t know why he was so poorly. I was allowed back down to see my little man that night, I remember gazing into the incubator holding his little hand and willing for him to get better - for only minutes later to watch him stop breathing! I froze as doctors rushed around him to resuscitate his tiny little body. Thankfully, they did. It wasn’t until then that I actually released how serious this was.

The following day was the worst day of my entire life. I reluctantly returned to my room on the postnatal ward and through sheer exhaustion, I had managed to get some sleep. I feel so guilty thinking about it now; I was sleeping whilst my son was fighting for his life. I was awoken by my midwife to say that the NICU needed me pronto. She no sooner had me in a wheel chair and I was getting whizzed down the corridor so fast in the sheer panic (I could hardly walk after doing too much too soon after my operation), I could feel how much she cared through her actions in that moment.

I was brought into a room where I was met by the consultant doctor who told me that my little boy had just had a cardiac arrest and he had luckily managed to get his little heart going again, but he wasn’t sure how much time before it may happen again. The doctor told me that they had managed to find what might be wrong with him: Ornithine Transcarbamylase (OTC) deficiency - it is a metabolic problem with his urea cycle. August couldn’t remove the waste from a feed, meaning toxic levels of ammonia built up in his blood (basically poisoning his body). I could not believe what I heard next “there is no cure”. Giving the doctors permission to turn off August’s life support was the hardest thing I have ever had to do, it’s a decision that no parent should ever have to make.

The doctors removed all the wires and tubes before I finally got to hold my son again, the hospital bent the rules and allowed a few family members to meet him. They had to say hello and goodbye at the same time, some close family never even had that privilege, due to the pandemic. I held August as he took his last breath surrounded by love and support from family and the hospital staff. That was the only thing I could do for my son was let him die peacefully.

OTC is an inherited condition from the mother’s side, and it only affects boys, which is why me and my daughter are unaffected by this hidden deficiency. We were so excited to finally have a boy in the family, as we have five generations of girls. I can’t stop thinking about how my baby would still be alive, if only he was a girl. We are still waiting on DNA confirmation that this is what was wrong with August, but I am told by doctors that they are 99% sure this is what took August from us far too soon.

I can’t thank hospital staff enough for the love and compassion they showed August and my family during our time in the neonatal unit. Which is why we would like to raise some funds for the unit and to hopefully help save babies lives. My boy could not be saved that day, but I hope that we can raise enough money to buy a vital piece of equipment so more babies can go home with their families.

Thank you for taking the time to read.

Jess, Adam & Evelyn