Working through it: Life after losing my baby

“You must be so strong.” 

“I wouldn’t have the strength that you have.” 

“Where do you find the strength to deal with that?” 

You just do. My response whenever anyone asks about my strength is that you don’t realise how much you have until you need it. 

Mine and Evelyn’s story

My name is Vic, and I am Evelyn’s mummy. Heartbreakingly, our story does not have a happy ending. Evelyn passed away when she was 15 weeks old. She spent her whole life in the neonatal unit in St Mary’s Hospital, Manchester.  

I suppose it isn’t correct to call it an ending though, perhaps a transition. You see, Evelyn still lives through me, I am her legacy. Without strength and resilience Evelyn’s memory might fade, all the lessons she taught me would go unheard, her incredibly short life would be meaningless. Especially due to the age she was when she passed, she didn’t have the ability to write down her thoughts to pass to the next generation or make vlogs telling you what it means to live fully. She passed on her wisdom to me. Therefore, I must find strength, I must find resilience and must find a way to live with the pain of being without her.  

A complicated pregnancy

Let me go back to the beginning of our story. I found out I was pregnant in early summer, 2018. At our 20-week scan things took a worrying turn. The sonographer could not see that her heart was connected. We were referred to the Fetal Medicine Unit (FMU) in St Mary’s hospital and a specialist obstetrician also couldn’t find the connections, and termination was discussed.  

Two agonising days later, we were scanned by a fetal heart specialist and thankfully he found the connections. However, there were minor complications still that needed to be monitored; she was very small, she had one kidney, and her heart was on the wrong side. So, we continued to be scanned at the FMU by specialists. At the 13th scan, while waiting for a planned amniocentesis (a procedure where a small sample of amniotic fluid is taken for testing) the consultant entered the room and announced that the pregnancy was no longer safe. I was told I would be admitted to hospital and my baby would be brought into the world by c-section on Friday 25 January 2019.  

A short but powerful little life

The Friday morning arrived, I had my ‘elective’ c-section and Evelyn was born, briefly shown to me, then whisked immediately away to an incubator. When I could finally move, I was allowed out of my bed and my husband wheeled me down to the neonatal intensive care unit (NICU) to meet my baby girl properly for the first time.  

I couldn’t hold Evelyn yet, but I got to touch her. She had a tracheo-oesophageal fistula, which meant that her oesophagus was still attached to her trachea and not her throat. She needed surgery urgently to detach them. She went into surgery that Monday.

One hour into the procedure, to our surprise there was a knock at the door and we were visited by the surgeon. Evelyn was ok, but there had been a complication. One of Evelyn’s lungs had grown off her oesophagus and not her trachea, something so rare that there had only been one other case of this in the past 10 years in the UK. My husband asked if that baby had survived, the answer was no. In that case they’d left the lung in, so all we could do was try the opposite; take it out.  

Evelyn recovered well from her surgery. She was a fighter. Slowly, however, over time her heart became very poorly. It’s extremely rare for a baby to survive with only one lung, but my goodness did Evelyn give it her best shot. I witnessed my tiny baby girl endure multiple medical procedures, breathing difficulties, and the discomfort of intrusive medical equipment to keep her alive.

She was tenacious, feisty, strong, resilient, and cute as a button. Her will to live was quite simply inspiring and she fought so hard with everything going against her.

What I learned from Evelyn

In her short time with us, and in her death, Evelyn taught me more about life than I had learned in all of my 34 years. Here are some of the things that have stuck with me: 

• Life is precious. We get this one precious shot at this thing called life. Make it count. 

• It doesn’t matter how long your life is, it’s what you do with it that counts. In 15 weeks, Evelyn changed the world, because she changed me. I don’t think you can get a more fulfilled life than that.  

• Acceptance is key. We are all an amalgamation of the genes we inherited, the environment we find ourselves in and the events that have happened in our lives. I would not be writing this blog for you if Evelyn had not died. To move forward, we must accept what has happened to us and how that has made us who we are. You don’t have to like it, but you do have to accept it.  

• Find meaning. For me death is a natural part of life, nature happens, there is rarely a reason for it. By learning from Evelyn’s life and using those teachings to help others, I feel like it gives Evelyn’s short life meaning. 

• Adaptability. We all need to be adaptable. Life can change in a heartbeat. If you experience a traumatic event, it will change you. Accepting that change and allowing it will help you heal. 

• Become comfortable with pain, and other difficult emotions. If I don’t allow myself to feel the pain of losing Evelyn, then I cannot truly feel the love I have for her. That’s the thing, I feel so much pain, anger, sadness, because I loved so much.  

• Its ok to be human. We are complex, flawed and beautiful creatures. We will have triumphant moments, with plenty of mistakes along our life’s path. Sometimes we need to just survive, sometimes we will thrive. Neither is more worthy than the other, we are human and that’s worthy enough. 

• Love is powerful. Love makes you strong, resilient, and capable. The love I had for Evelyn, I truly believe, extended her time with me. Evelyn’s love for me has helped me stay strong, it got me out of bed every day, it taught me to love myself, it supports me when the pain gets too much.  

I am so proud to be Evelyn’s mummy. She truly is my greatest achievement and by moving forward with her legacy I hope to reach as many people as possible with her message of love, strength and fulfilment. I am strong because she makes me strong.