My Story- By Sorrel

Walking down the street we may look like the ‘perfect’ family. Mother, father, two little boys, dog. What can’t be seen is the little boy missing in the middle. The little boy who has made the biggest difference to our lives through the loss of his.

On the morning of 31st December 2018 our second son, Caspar, was born. My pregnancy had been easy. There had been nothing at appointments to suggest that anything was wrong. When I arrived at the hospital in labour Caspar had a good heartbeat. My labour itself was straightforward, relatively quick and Caspar was born in the birth pool. It was only at that point did it become obvious that something was terribly wrong. When I scooped him out of the water there was no cry. When I held him against me and rubbed his back there was no change. When I handed him to the midwife he was completely floppy. The emergency buzzer was hit and our lives changed forever,

Within hours Caspar was transferred to the NICU at St George’s Hospital in Tooting. My husband Jonathan had to make the devastating call to our parents and my brother, who was looking after our older son Max, that Caspar was very ill and that the prognosis wasn’t positive. He then travelled to the hospital in the ambulance with Caspar while I waited for my parents to arrive and to be discharged.

By the time we were reunited in the early evening, it was confirmed that Caspar was unlikely to survive. For a reason that was unknown at the time, oxygen had been restricted causing severe brain damage. The fantastic team in the NICU at St George’s continued to provide treatment that week, running tests to try and establish why and when oxygen hadn’t reached him. However the outlook never changed and we knew that he would die.

It may sound strange, but having such a certain outcome was helpful. We were able to begin preparing for the end right from the start and make the most of the time that we had together. We bathed him, dressed him, spent time with him, had him baptised. An amazing friend who is a photographer offered to take photos of us with him and we are forever grateful to have such beautiful images of the three of us the first time that we were able to hold him.

Most importantly Max was able to meet him, as well as his grandparents, great grandmother and uncle. Being able to introduce Max to his little brother was incredibly helpful when it came to explaining why his little brother wasn’t with us each night we arrived home.  Caspar was so obviously unwell, covered in wires and tubes, that he was able to understand that he was ill. But it also allowed him to create some positive memories, helping us with some of his care. When the time came, it was our decision when to take Caspar off his ventilator. He had been breathing on his own and we were told that how long he would be with us was dependent on him - it could be hours, it could be weeks. We hoped that it would be hours, that he wouldn’t be in pain, that we would be with him when the time came. And, it was. On a beautiful sunny lunchtime exactly one week after he was born, we were taken into an empty NICU ward, where we spent his final hours hugging him until he passed away in Jonathan’s arms. 

And then we left without him for the final time. The next time we would see him would be when we visited him at the funeral directors, which I think we both found more distressing than the day he died. In the time that had passed, we had forgotten quite how small he was and hadn’t thought about how cold the room would be. After that first visit we both visited him on our own before his funeral and I would encourage any parents who find themselves in our position to do the same. The second time, the day before his funeral, I was prepared - wearing a big coat and carrying a coffee. I lifted him out of his tiny coffin and sat with him, I don’t know how long for, until I had come to some sort of peace with what had happened. Until I felt like I had said goodbye. I know that Jonathan did the same.

We decided that it would just be us at his funeral. Partly because my immediate family all live abroad and we had encouraged them to return home, but mainly because we felt that it was something we needed to do just the two of us. Caspar’s funeral took place in the church that we got married in, that Max was christened in and that our rainbow baby will be christened in when he can be.

Very early on Jonathan had the idea to get a memorial bench for Caspar along a stretch of the Thames that means a lot to us and where we already spend a lot of time. It’s an alternative to visiting his grave, which we have yet to do with Max. This has been the best thing that we have done - it is a spot that we can visit as a family in a beautiful location and incorporate Caspar into our lives. Max is always very perturbed if someone else is sitting on it when we are planning to!

When Caspar died, as well as experiencing our own emotions, we had to consider Max’s. He was just about to turn three when Caspar was born and we had, as you are encouraged to do, been preparing him for the arrival of his little brother. So when his brother didn’t arrive home, we wanted to be honest with him, but we also wanted to protect him. We made sure that we both came home from the hospital every night to have tea and do bedtime together before Jonathan returned to the hospital. I stayed at home so that I was there for Max when he woke up, and we sent him back to nursery as soon as we could so that there was as much normality for him as possible. 

The day Caspar died, we were advised by the counsellor at the hospital to be honest and factual with Max. We told him that evening that his little brother had died, that his body didn’t work anymore, that the doctors couldn’t make him better and that he wouldn’t be coming home. And he has mentioned him every day since. He knows that Caspar is in our hearts and he speaks very factually about him. That’s not to say that he hasn’t ever been upset, but we have encouraged him to cry and to talk about his brother whenever he wants, just as we do. He knows that it’s ok to be sad and to miss him.

About six weeks after Caspar’s death, we had the results of the postmortum. For an unknown reason, it seemed that my immune system had started to attack the placenta, damaging it to the extent that oxygen couldn’t travel across. As Caspar was born full term and in perfect physical health otherwise, it was determined that it likely started no more than a week before he was born. There was nothing that was missed, no sign to have warned us.

Jonathan and I knew immediately that we wanted another child to complete our family. Once we had received the postmortum results and met with the team at Kingston Hospital to talk through the case, who reassured us that there was no reason we shouldn’t start thinking about another pregnancy, we did just that. We’re very lucky and have never encountered problems conceiving. Seven months after Caspar was born I fell pregnant with our third son.

A pregnancy after you have lost a child is nine months of anxiety. Unlike previous pregnancies, getting to the 12 week scan meant nothing to me. Hearing a heartbeat meant nothing to me. From the moment I felt the first kick I was paranoid about them. Not an hour went by where I wasn’t conscious of the baby’s movements and, around the time of Caspar’s first birthday, I had to take myself into triage to reassure myself that everything was ok.

We decided to stay with Kingston Hospital. The consultant that led the investigation into Caspar’s death was our consultant throughout my third pregnancy and this gave us a huge amount of reassurance as well as continuity of care. We had regular appointments, with scans each time and the decision was made that the baby would be born as soon as I reached term at 37 weeks. 

We wanted this birth to be a different experience for all of us. We knew the date that he would be born, I just had to decide whether to be induced or to have a c-section. I am normally quite a decisive person and have a strong gut instinct, but on this I just wasn’t sure. I knew what to expect from a natural birth and was anxious about the recovery from a c-section. However an induction isn’t the asme as going into labour naturally and the likelihood of additional intervention was higher. In the end I decided to have the c-section. It was a way for us to control the experience the most, with the assertional benefit that our consultant would do the procedure.

And so, on day two of lockdown, we left Max with my parents and three hours later Oscar was born. It was the most positive experience for both of us and the relief when we heard him scream as he was born was overwhelming. We had prepared ourselves for him needing extra help breathing given it was a c-section at 37 weeks, but his little lungs proved they were in full working order and we were home, introducing him to his big brother, the next day,

Three months later, as lockdown is beginning to be eased, we are finally able to introduce Oscar to the rest of his family. While that has been hard, I’ve been surprised at how few low moments I have had. I was prepared to experience another wave of grief for Caspar, but that hasn’t happened. I can’t speak for Jonathan, but I am relieved to see that Max has only reacted positively to the arrival of his littlest brother.

There are a number of things that I have turned to over the past 18 months to help get me to where I am today. Without a doubt, returning to running has been one of them and, when it was too soon to run, getting outside every day and walking. I could write a whole other piece about the physical challenges to overcome as a woman whose body shows signs of a recent pregnancy when the baby isn’t there, but the benefits of getting outside and running for my mental wellbeing are more profound. And discovering the Rainbow Running Club and having the opportunity to combine that with the ability to speak openly about our experience with people who understand has been invaluable.

We did decide to have counselling too. Unfortunately this is one area that is severely under provided for within the NHS (from our experience). We were lucky enough to have access to sessions privately through my work (who I should add have also been amazing and supportive throughout). While we found this helpful initially, we decided that we had got what we needed from it within a handful of sessions. 

Instead, I have found writing to be my therapy. Instantly I knew that I wanted to write letters to Caspar, and so I did. And to Max too. I bought two beautiful diaries, had their names inscribed on the front and wrote to them everything that I wanted to say. While I don’t feel the need to do this as often now, it remains an outlet for me, a place to deposit everything that is otherwise trapped in my mind and my heart. And now I have added a third.

You can connect with Sorrel via instagram; @sorrelbasher

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