Neonatal Loss

Navigating the Wilderness

By Cass

 

From the very first positive pregnancy test, our journey in to parenthood was flooded with questions. I remember the first moment, the very first question, as if it was yesterday.

“Can you see that really faint blue bit in the square?”

“Yes! It’s not faint, it’s really thick.”

“That’s the control line, the one in the square!”

It was three more tests before we started to believe it. And so began our life as parents. We cautiously set off together in a whirl of excitement and apprehension, writing lists of everything from what we would need to buy, to baby names, to everything we wanted to do together before our new arrival. Early pregnancy was very kind to me, so when our scan appointment rolled around at nine weeks I waited patiently, with a very full bladder, still not quite believing my pregnancy until our baby was right there on the screen, measuring about the size of cherry with a tiny heart beating away at 166bpm.

Getting prepared

The following weeks and months marched us on forward, with every step bringing us closer to our baby. We ticked various items off our ‘to buy’ list: baby clothes, nappies, a child friendly house within walking distance of a great primary school.  We relished our child free time together; making spontaneous plans and savouring our weekend sleep ins. We found out that our now banana sized baby was our healthy daughter at our 20 week scan, and we named our baby Norah Olive. Our questions started to feel closer to decisions as we planned Norah’s birth and built our new world of parenting around us.

Her arrival

Norah was born on the 24th June, weighing 9lb 6oz, with my cheeks and frown, her Dad’s hair and brow, and her own adorable button nose.  Norah was placed on my chest moments after her birth and in that instant I was complete, with a happiness and love like no other; there really are no words to describe this feeling. We settled in to a three hourly cycle, writing down every feed, nappy and sleep as instructed by our midwife; it was five days before we realised we could stop writing every second of our day down! Breastfeeding didn’t come easily to us, and our first days together were devoted to expressing milk, researching new positions to try, tongue ties and deliveries of any product that promised to solve our feeding  troubles. By the time Norah was a week old we had found our rhythm, we were starting to make breakthroughs with feeding and relaxed in to our new selves as Norah’s parents, our lives were beyond recognition but we relished every second.

Navigating the wilderness

In the very early hours of the morning after a few days at home together, our lives changed beyond recognition again. After our first problem free feed and as I was about to settle Norah back down to sleep, Norah stopped breathing. Within minutes our house was full of first responders, and in the blink of an eye we were standing in A&E whilst countless doctors worked on our daughter. Every second played out in front of us as though it was nightmare, it couldn’t possibly be our reality, there had to be a mistake, one of the doctors is sure to turn around and tell us we are over anxious new parents and Norah is just fine.  One by one our family appeared around us, each sharing the same look of horror and confusion. We were led to a room away from Norah by a consultant, there wasn’t a mistake, Norah had been in cardiac arrest for 36 minutes, she was stable but in an induced coma and would be transferred to Paediatric Intensive Care as soon as possible. We had hundreds of questions between us, but none we were prepared to hear the answers to, so we nodded in silence, in a state of utter numbness.

Bewilderment

We were transferred together to a hospital over an hour from home where we spent a week in a haze of shock and grief. With every test and scan we came closer to the realisation that our baby wasn’t going to get better, Norah was going to die, and we didn’t know how much longer we had to fit in a lifetime of love. Every morning and afternoon we met with Norah’s consultants, we wanted to ask them to save our daughter, to end the nightmare we had found ourselves in, to give us more time. We knew the limits of the medical care that could be provided, and we had to make the best decision that we could for Norah, so our questions over the week became requests for Norah’s end of life care. At just two weeks old, our daughter died in our arms, and our world collapsed around us. Norah was taken from us some hours later, and as she was carried away from me I felt every piece of our future die along with her, our baby, our toddler, our teenager; every hope and dream for our first born daughter shattered in an instant.

 

Adjusting

In the weeks that followed we found ourselves back home, the two of us once more, making new lists and plans, but this time for our baby’s funeral. The world we existed in for six years together was over; every part of home was the same as it is was, yet nothing felt familiar. Norah’s death was like an explosion, detonating every element of our previous selves and leaving agony in its wake. There is a wealth of information and support available for new parents, but not when your baby has died. We felt trapped and isolated, living in a purgatory of new parenthood without our baby; there were no answers to our questions and no spaces to figure out how to navigate our new wilderness. We were broken, utterly devoid of the ability to do anything other than breathe, but even that felt impossible.

 

Parenting Norah became our lifeline, because as much as we tried, we couldn’t fit a lifetime of love in a matter of days. We spent every ounce of energy we could muster carefully planning Norah’s funeral. We found her home in a burial ground come nature reserve in the country side, crafted a ceremony to celebrate our daughter’s life, and travelled across the country to collect all of the items we had chosen to bring together for Norah. On the day of Norah’s funeral, a wild blustery summer’s day, we spent our last hours with our daughter, preparing her for burial. We dressed Norah together and wrapped her in a beautiful cotton shroud adorned with an olive branch, and in what felt like our final act of parenting, we buried our daughter together.

Navigating the wilderness

Learning to Live

Very slowly, we are learning how to live again and piecing ourselves back together. We will never be the people we were before Norah; her death almost destroyed us, but her birth made us. We built our lives around Norah, and anything less than a lifetime together is impossible to comprehend. Now that she is gone, we have to find very unconventional ways to keep Norah at the centre of our world. Our parenthood doesn’t look anything like we imagined, but it is a parenthood many have to face. We are one voice of many in a hidden world of baby loss, a tribe of parents living every day without their children. We are sharing Norah’s story, and building a legacy in her name, in a promise that her life will mean more than tragedy. We hope that by sharing our daughter’s life, we can ease the pain of others that find themselves in similar circumstances, and help broaden the desperately needed conversation about the devastation of baby loss.

Navigating the wilderness

Cass x

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