‘Mom received a phone call, we must come to the hospital quickly. We were meant to be picking out baby clothes! Our world came crashing down. Life would never be the same again.’

“Briony was born 2nd July 1992, exactly three and a half years after me. We grew up in our family home with our Mom and Dad. Our Dad left the family home in the early 2000’s, where he remarried, had three more children, and was never to be seen again. Our Mom met her current partner in 2002 and our family increased to five, with the arrival of our little sister in 2005. I’m not going to sugar-coat and glamorize our childhood; it was difficult and painful at times, but Briony and I shared so many fun and silly moments together, which in hindsight now completely outweigh the bad times. We also shared a lot of tears, harsh words and scraps; but she was still my sister and I love her with all my being.

Fast forward to January 2016, we both found out we were expecting our first babies! Briony was due her little boy in the August and I was due my little boy in the September; I was so excited and happy to share my motherhood journey with Briony. Briony’s pregnancy was extremely difficult and problematic; she had numerous admissions to emergency department, maternity unit, and the Doctor. This pain she was experiencing was sharp stabbing upper abdominal pain which radiated to her back. No pathological cause was found, and it was never investigated. This pain was continuously associated with her baby being on the larger side and kicking up under her ribs. Alongside the sharp stabbing pains, she had nausea, vomiting, reflux, abdominal tenderness; which all in hindsight were symptoms of gallstones.

Briony gave birth to her son, Rowan, on 16th August 2016. The birth was traumatic for them both. Briony was induced and during labor her little boy was having difficulties coming out, Briony was taken to theatre, where she had: three failed epidurals, three failed spinal taps, failed ventouse and finally with every bit of strength she had he was born with help of forceps. She got to meet him and hold him, but she hemorrhaged shortly after and was put under general anesthetic to remove the afterbirth and have blood transfusions. Briony and Rowan came home on 20th August, life was sweet.

Saturday 3rd September 2016 the first day of my maternity leave. Briony collapsed at our family home late in the evening. She complained of extreme stabbing pain in her upper abdomen and severe projectile vomiting. We called for an ambulance and took her to the emergency department. I was left at home with my new-born nephew, heavily pregnant, worrying what was going on at the hospital. She was later discharged with Cholecystitis, a prescription for Buscopan, and told see her Doctor for a referral for gallbladder removal. Little did we know that she was discharged with gallstone pancreatitis without treatment. The day after Briony collapsed again at home. She couldn’t move, she couldn’t speak, she couldn’t breathe properly she was in so much pain. She was rushed back into hospital and this time she was admitted, and that’s where she stayed.

We knew little about what was going on with Briony until she was taken into Intensive Care. A gallstone had shifted, moved and was lodged in the common bile duct causing the pancreas to begin digesting itself. She had a small part of her pancreas which was still alive; we were told that we should expect the worse outcome that day. Her infection levels were the highest the consultant had ever seen, she had severe necrosis, fluid collections in her abdomen and splenic thrombosis. She had several procedures to have gallstones moved, drains inserted, and central lines installed.

Every day, I spent 12-hour days by her side, heavily pregnant and frightened of how my life changing so much. I watched my sister deteriorate rapidly and recover even quicker. Each hour was so unknown. Each day so unclear if she was going to pull through.

I went into labor and had my son, Elijah, on 28th September 2016. I had a traumatic birth, I contracted material sepsis and ended up having an emergency c section. My recovery was slow and difficult. My heart ached and worried about Briony. All I wanted was to be with her, I couldn’t get to her or be with her. During this time, she became very ill again. This is something I didn’t know at the time, my family were protecting me, they were allowing me to heal and enjoy my first days with my son.

Late October the decision to transfer Briony to a specialist ward at another hospital was made. At this point she now had three abdominal drains, barely any residual pancreas tissue remaining, ‘Red man syndrome’, type 3c diabetes, splenic thrombosis, chest pains and breathlessness, multiple pseudocysts, TPN fed via a PIC line, had a nasojejunal tube and had severe sepsis. Briony had a stent fitted to her pancreas to help drain the necrosis and fluid from her pancreas and abdomen. Finally, there was positive news that she was on the right path; they confirmed her heart was fine and collections were exiting via the drains well. Briony was able to get up and out of bed. She was wheel chaired down to the hospital cafe for the afternoon and fed her son his night time bottle. It was the first time in weeks that our Mom felt positive and happy to leave Briony.

Sunday October 30th our world came crashing down. Life would never be the same again. Mom received a phone call to say that we must come to the hospital quickly. My phone rang, and Mom told me to come. I was meant to be seeing Briony that very day and I promised her that I’d bring her my kindle and maternity shorts, so I packed them got myself dressed and ready. I still to this day can remember exactly what I wore; black vans, black jeans, black vest, patterned jacket and gilet. I ordered an Uber and arrived at the hospital just before 5 o’clock. I waited in the emergency room line, to ask the receptionist to take me up to the ward. I told her I was there to see Briony Daniels ward A800. I should have known then that she was dead, the receptionist’s face told me. But I didn’t want to believe that. She didn’t speak a word to me in the lift on the way up. Walking from the lift to the ward was the longest walk of my entire life. My Auntie came out of the ward, face pale and sick, I started saying ‘no no no no’. She told me I needed to sit down, and I collapsed to the floor begging for it not to be true. How has my 24-year-old sister suddenly dead? We were ushered into a small, hot, bright side room. Complete silence on the ward where the other patients slept, and my sister lay dead. We were told it was most likely a blood clot that had caused her death, they gave their condolences, gave us some leaflets on bereavement and sent us on our way. Sent us into the cold and dark morning without Briony. The rest of that day and weeks to follow were a massive blur. To be honest, days go by now and they can be very blurry still. Why the hell was this happening to my family? We were meant to be going out picking baby clothes, I was not meant to be picking her coffin or flowers! The funeral was 23rd November 2016, there were so many people that came to the funeral and cried and told me that that they wished they had been there for her when she was ill in hospital. Then they just vanished. They said their goodbyes and they moved on. I find that hard to swallow. I can’t escape Briony’s loss like everyone can, I have lost 24 years and a future with Briony. I can’t run away from home, we share a family. I can’t run away from work; we shared the same office space.

I found that my mental health began to deteriorate at the start of 2017, my depression and anxiety was slowly crept back upon me. I had completely withdrawn from my friends, I avoided meeting new moms and going to baby groups. The grief completely consumed me. I spent from November 2016 until January 2017 trying to access Briony’s medical records. Having people put obstacles in the way and barriers in place to stop me from getting them. Kinda like playing Mario cart, when the player in front throws a banana skin and you slide off the track. Then I got them. They had been shuffled like a deck of cards. I spent 2 weeks sat on the floor, with my new baby, putting pages into date order, trying to make some kind of order. After that I spent months and months reading Briony’s medical records, from pregnancy to the end, back to back and probably about 3 times. I knew a completely different side to Briony, and one I didn’t want to know. I knew her inside out, literally. I knew all the gory details of her abdominal drainage bags, the hourly events in ICU, the drug errors, the needle prick injury; I knew things I didn’t know when she was ill, the pseudo-cysts, Kidney failure, sepsis, necrosis. The worst part was reading the post-mortem report, I won’t go into any detail, but it’s not light reading and it is something that haunts me on a regular basis. Reading these kick-started nightmares, and intrusive thoughts. I found anything triggering, I could be in a meeting and a sound could kick start an intrusive image of Briony, laying there cold and blue, blood coming from her ears. I completely scared myself with what I was thinking and dreaming. Mornings were, and still are torture, especially after a cocktail of nightmares, vivid images and the sudden realization that my sister is dead. Most mornings I would to peal myself out of bed after a restless and distressing night’s sleep. The moment I open my eyes I feel so glad the nightmare is over, and that’s when the realization of it all sucker punches me. It almost feels like I have been winded; it takes a moment for me to catch my breath back and start breathing normally again. To drag each foot to the bathroom to get ready for a full day of work, to get ready for a full day of being a mom, to get ready to for a full day wearing a mask is the hardest walk of the day.

People made me feel 100 times worse too. There were people who I thought would be there and weren’t and there who were people there but didn’t understand. This made me feel so alien and alone. So many times, I have heard people say:

‘You’re so strong…’
‘You’re doing amazingly well…’
‘I couldn’t do what you’ve done…’

 Or

 ‘You won’t feel like this forever, with time I’m sure you’ll feel better’ 

‘You can’t let this affect your life…’ 

 ’Briony wouldn’t want you to feel like this…’

None of that is helpful. I didn’t choose to live this life, and I can’t just erase 24 years of my life. I must get up every day, and just function. I don’t want to be strong, it just happens. I have a son and a family who rely on me and I just must get up and continue to be alive.

All these situations and feelings really made my mind completely foggy and I knew something had to give, I needed help. I started taking anti-depressants and I found a bereaved sibling support group and signed up for a weekend retreat for bereaved siblings. And this was my life line. This was the first time I had ever done something specifically around the loss of Briony and my grief. I needed to reach out and talk about my feelings and be with other people just like me. Going away and making myself vulnerable was the best thing I had done for myself since the death of Briony. That weekend I was able to whole heartedly listen to myself and how I felt. It was the first time I acknowledged my feelings and openly talked about them to complete strangers; but strangers I felt at home and safe with because they understood my loneliness and heartache. Being in this exclusive club allowed me to talk openly with people without fearing I was going to upset someone or make someone feel awkward or that I was being judged for not being ‘over it’. I cannot explain the amount of comfort I took being able to cry and laugh and ride the rollercoaster without any of those fears, and I finally felt like I belonged somewhere. I felt like I was Kyla; not the old Kyla but the new Kyla, and I felt content and comforted.

The end of that weekend was so difficult, I didn’t want to leave these people and my new family. I wanted to stay where I belonged and where I was understood and cared for. I was so scared of going back home to the reality and loneliness of being a bereaved sibling and mom. But I was glad to be leaving with a new family and connections that will last a lifetime. I also realized that I needed to make time to grieve and that it is totally ok to cry and be angry that my little sister is dead. I now have accepted that grief is a part of my life now and it isn’t going to go away, like the love for my sister will never go away.

So, here I am, January 2019. I’ve survived the two anniversaries, three Christmas’, birthday’s, weddings and special occasions, and all without my sister.

If I was told I would be without her this three two years ago, I wouldn’t have believed it. We had our future together as new Mommy’s, best friends and siblings. I didn’t choose to subscribe to this cruel and exclusive secret society. I didn’t want to wear the ‘I have a dead sister’ badge. I didn’t want to be an official member of the ‘Death Club’. But here I am.”