Photographing 15 Faces of Baby Loss - My own story

Joanne Lewis • 9 October 2019

How I learnt the true meaning of eternal love

9th to 15th October is Baby Loss Awareness Week. This year I have taken photos of 14 other women from my local East Herts Sands (Stillbirth and Neonatal Death Charity) and they have bravely shared their stories of loss and eternal love.

Today I would like to join their bravery by sharing my own story about how a little boy called Phoenix irrevocably changed my life.

It is only whilst I sit here writing, that it has struck me I've never actually written the details of my story down before. I've talked about our son Phoenix pretty much constantly for the last 5 years, he has become a huge part of everything I do from photography to various arts and crafts. He is and always will be part of our family, but it is very painful to look back to that month all those years ago when everything went wrong.
Phoenix's tiny little hand holding mummy finger
My first pregnancy was tough, I had uncontrollable weight gain and water retention, as a personal trainer I had to stop working very early because I just couldn't keep up (thankfully the upshot of this was me pursuing a career as a photographer). I had pregnancy induced hypertension which ultimately turned into pre-eclampsia and wasn't allowed my planned water birth. Instead I had an induced birth, where my son "almost" died and was rushed into an emergency c-section.

By contrast, my second pregnancy was polar opposite, I stayed fit and healthy, managed to keep training and felt amazing. Our 12 week scan was perfect, the 20 week scan was perfect too; and that's it isn't it? Once you pass those milestones everyone knows you're halfway towards bringing a healthy baby home - or at least, that's what I thought. We were starting to buy all those lovely baby bits, decorating a room for our eldest so that the baby could move into the nursery, and discussing names; we were soon going to be a family of 4.  

That is until just 5 days later, when my waters broke... at 21 weeks.
Maternity Photos with Phoenix
When my waters broke, it wasn't a gush like you see in the movies. I'd been walking around all morning feeling more wet than usual, and even had to go home to change my trousers, I saw a few friends at a local village fair and asked them if it was normal, they assured me it was, but I was still a little concerned that it didn't quite seem right, so my husband took me to the hospital. They didn't take me seriously - barely checked me - told me I was wetting myself and packed me off home. In the 30 minutes it took to get back to our house, I had soaked through a pad and another pair of trousers. We called the hospital who told us to come straight back. This time I was checked by a consultant, who confirmed my waters had broken.  

I wasn't in labour, but no matter how long we hung on (this is when you start thinking about the magic 24 weeks "viability") his lungs would almost certainly be affected and we were told we should terminate the pregnancy. Five days ago we'd seen our fully formed healthy baby moving around on an ultrasound, playing peekaboo and just generally showing off how amazing he was, and now we were being told my body had let him down and we should give up on him.
Phoenix Rae Sand art by Carly Marie
Well I'm a researcher... I know. STEP AWAY FROM GOOGLE. But a search told me everything I needed to know about PPROM (Preterm Premature Rupture of Membranes) while it was not good, it was not (necessarily) a death sentence. Some women, who took antibiotics and religiously went on bed rest managed to hold off labour for months. The magic number was 34 weeks - this was my new aim; all I had to do was drink water and lie on my back for 3 months.

Sadly, our hopes were crushed a week later when a follow up ultrasound showed that something awful had happened to our sons head. They had never seen anything like it before. The consultant started questioning whether we had a history of spina bifida in the family? If I'd consumed any raw meat or unpasteurised dairy in the first 12 weeks? If I'd taken my folic acid supplements? We reminded them that his scan less than 2 weeks before had been perfect. This abnormality was not genetic, it had been caused by my waters breaking, pressure on his skull had affected its shape and growth. Now, even if we held off labour to 34 weeks, we were told our son would be severely brain damaged.
In the Hospital when Zachary met his baby brother - He was in awe of his tiny legs and feet
But still, I was a mother and I was not giving up on my child. Over the next month I continued bed rest in-between consultants appointments and scans. We were very forcefully instructed by one consultant to terminate the pregnancy, as if there was no other choice? We politely declined, and were referred to a team of specialists at UCLH where some of the best foetal medicine consultants in the country sat us down, and explained while it was our choice, their recommendation was that we terminate the pregnancy. Our son by now was most likely going to be born with severe disabilities and would spend his first year in the NICU undergoing brain surgeries that he likely wouldn't survive. As we were now past 24 weeks, legally 2 doctors had to consent to a termination. They didn't hesitate.

We agreed we would go back a few days later for an MRI, and that we would terminate the pregnancy. It was the most harrowing decision we've ever had to make. Two days later, we got the train into London. I was howling the whole journey, tears streaming down my face, a broken woman - the carriage was silent! 

Before proceeding, we had an ultrasound, and for the first time in a month I was struck by hope, the elongated skull had begun to look more normal. Pregnancy is an amazing thing - what if I could hold off labour for another 2 months - could my body heal our son? Even the slightest glimmer of hope was enough for me. I was not giving up on him. We looked at each other and both knew we couldn't go ahead with the termination. We got the train home again, exhausted, mentally drained, but quietly hopeful. All I had to do was drink copious amounts of water and lie on my back for 2 more months. 

Two hours later I was in labour.
Phoenix's tiny but perfect little feet and toes in mummy hand
I tried to ignore it - this couldn't be real? I breathed through the contractions for as long as I could at home, hoping it would go away. At 4am I surrendered and went to hospital. We were put in a private room with a lovely midwife, where I had to explain our situation over and over again to her, the consultant, the NICU team (apparently hospitals don't share notes).  Finally they left us alone. I bounced on a ball and breathed through my labour, still praying it would stop - then several hours later, it did.  My contractions stopped and I had a rest; when they didn't start again a monitor was put on me and we were told what my body already knew - our son had died.  The consultant came in with a portable ultrasound and confirmed that there was no heartbeat. 

I blame the stress of that day for sending me into labour. 
I blame my body for letting down our healthy son.
I blame myself.
Sketch of Phoenix
18 months, 2 miscarriages, and another complicated pregnancy later, I gave birth by emergency c-section to our tiny 32 week old, 3lb 4oz, 3rd son... our rainbow baby, who has completed our family and helped heal all our hearts (a little). 

But our family will never really be complete. A vital piece of our family is missing, and will always be missed.

Our son may have been stillborn, but he was "Still Born" and is Still Loved!
An amazing charity "Remember my Baby" can come to the hospital to take photos of your child and family if you experience a stillbirth. My friend and fellow newborn photographer Kathryn Hill from Alfreton has written a blog today about volunteering for RMB... please check it out https://www.kathrynhillphotography.com/post/remember-my-baby-charity-why-i-m-a-volunteer-photographer

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