As part of baby loss awareness week 2018 I have been so lucky to have some really inspirational families willing to share their stories of loss and parenting having been blessed to go on to have their rainbow babies.

The third story I am sharing is from Anna, here is her story…

 

My name is Anna. I’m 36 years old and live with my husband and three of my four children. I’m currently on maternity leave with my youngest daughter, from my job as a Clinical Psychologist in the NHS. I love being a mum and I love doing things with my family, but I am a changed person from who I was almost seven years ago because that was when I became a mum for the first time. 9th November 2011 was one of the happiest days of my life – I gave birth, I met my daughter, I named her and held her and fell in love with her instantly. She became my world and I couldn’t wait for the future we had ahead of us. We called her Erin Susan and she was absolute perfection.

Erin was born at 8:45am, weighing 5lb 7oz. She was teeny tiny and lovely. The first 24 hours with her were normal – cuddles, skin to skin, trying to establish breastfeeding… Then the doctor came to see us. We had found out in pregnancy that Erin had a chromosomal disorder called Turner Syndrome. Due to this she had increased likelihood of having a congenital heart defect. They had scanned her at Blackpool Hospital where she was born to check her heart, but couldn’t rule out a problem. It was necessary for her to be transferred to Alder Hey Children’s Hospital, 50 miles away for examination by their cardiac team. As I was still recovering from the birth, the midwives would not discharge me so I could not accompany her on this journey.

I insisted my husband go with her and lay in my bed, surrounded by women cuddling their newborns, waiting to hear what was happening with my precious new daughter who was only one day old. I had been reassured she would only be gone for around four hours. However that time came and went and then I got a phone call from my husband. Erin did have a problem with her heart. They were admitting her. She needed heart surgery. I was distraught. I had a panic attack for the first time. I desperately spoke to the midwives about getting discharged, and finally at 9pm that evening, I was reunited with my daughter. However, now she was in an incubator and attached to machines. This was how she was to live the rest of her life.

Thankfully a wonderful charity called Ronald McDonald House gave us accommodation on site at the hospital, only minutes from Erin’s bed. This is where we lived for the next three weeks as Erin battled for her life. She underwent heart surgery when one week old, but for reasons we are still unsure of, was unable to recover from this. For two weeks she was in intensive care as they tried to get her off bypass, but they never could. At 5pm on 1st December Erin died in my arms. Her death was unexpected, the surgeons could not explain what had gone wrong. The time afterwards is a blur. I know we were taken in a taxi the next day to record her birth and her death in the same appointment – a special double appointment arranged especially for such a devastating situation. I remember the registrar suggesting maybe my husband and I could go on holiday and feeling absolutely appalled and disgusted. How could we possibly do anything? How could anyone do anything? How could the world keep turning, how could people get on with their lives given what had happened? Erin had died. It felt as though my world had ended. I didn’t know how to live and anxiety, fear and complete devastation took over.

I was off work for seven months. I felt anxious when I had to go out in public. I grieved for Erin and I poured myself into fundraising in her memory, desperate to ensure her life had meaning and that she would never be forgotten. My husband and I also began to talk about having another child; initially a horrific and terrifying thought to me – I felt tremendous guilt that it would appear as though I was somehow trying to replace Erin. However, the longing in my heart for a child I could hold and the aching of my empty arms was persistent so 16 months after Erin was born I gave birth to her younger brother. My husband and I are now lucky enough to have three beautiful younger siblings for Erin.

I’ll never know what kind of parent I would have been were I not a bereaved one. However I feel sure that Erin’s death has changed me. I feel fear regularly. All three pregnancies following Erin’s have been agonising as I spent each day certain I was just getting closer to the day I would have to say goodbye again. Reassurances that all would be okay this time were of no use because that was not my experience. My experience was that you open your heart up to totally and completely love this tiny child more than anything else, only for them to be ripped from you. I somehow survived three pregnancies in which I felt certain each day that my child would die and that there was absolutely nothing I could do to stop it.

Now my children are 5, 3 and 5 months old. I treasure them and feel grateful for them every day. Being the mother of a child who died has made things difficult though. Everyday conversations can now be challenging and upsetting. When I’m asked how many children I have, what do I answer? Does this person really want to hear about my daughter who died? I’m especially conscious of this at baby groups and antenatal classes. These pregnant women and new mums don’t want to know about the sad reality that some babies die. However, I cannot deny Erin her life and existence. I cannot say I have only three children when my heart carries my love for four.

Erin’s death has also impacted on my ability to cope and stay rational when any of my children are ill. I immediately return to the feelings of powerless I felt with Erin and to my experience of being a mother to a child that dies. I cannot shake that and I struggle a lot at these times. My brain immediately takes me to the worst case scenario and I start to prepare myself for them dying. Every time it feels totally real and every time I am taken back to how I felt when Erin died. Emotional pain so acute that it feels as though your heart is being physically ripped apart.

It is incredibly important to me that Erin is remembered and acknowledged as an equal and important member of our family. My three and five year old know and talk about their big sister who ‘lives in the stars’ and we celebrate her birthday every year with a birthday cake I make myself. It is their normal to be growing up with a sister who died. I know there will be more questions as they grow up, but for now they both accept that as the facts of their life. I continue to fundraise in Erin’s memory and am a trustee of a charity called Aching Arms who support bereaved families. This is my Erin time and it is important for me to have room for this in my life. I will always feel guilty for everything that Erin is missing out on. As I take my other children swimming or to a theme park or buy them Christmas presents I’m always aware that this is something that their big sister never got to experience, so I ensure I do other things that are just for Erin and about ensuring her memory lives on.

I do still feel joy and happiness and spending time with my family is my favourite thing to do. However, the grief and sadness can strike from anywhere and at anytime. It is sometimes in the middle of the most joyful and happy occasion that the now familiar pangs of loss and emptiness hit me as I try to accept that this is my life now and that a crucial part of me will always be missing.
If you have connected with this story and you would like some support yourself, you can follow me, Helen Grimshaw, on social media by clicking the links below
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