Chloe was a much-wanted baby. I’d been diagnosed with polycystic ovary syndrome, and after a number of tests, was told by our fertility specialist that it was unlikely I’d fall pregnant naturally. We were waiting to start our fertility treatment when I found out I was expecting, and it was one of the happiest days of our lives.
The first 20 weeks of my pregnancy seemed to fly by. I remember waiting for my 12-week scan and thinking everything would be OK once we made it to three months. I recall leaving the sonographer’s office and being so grateful we weren’t going into the room where bad news is delivered.
We made so many plans in the first 20 weeks. We bought everything for the nursery and imagined what our baby would be like. We’d decided we didn’t want to know the baby’s gender, so everything was neutral. We watched my bump grow, felt our baby kick. Life was perfect.
When it came to the 20-week scan, I honestly thought our main purpose for being there was in case we wanted to know whether our baby was a boy or a girl. It simply didn’t occur to me that we could be given bad news. Now, I remember so many details from that day; things I probably would never have remembered if the day had been normal.
I had on a loose-fitting white cotton shirt. I had to pick up my husband from the city centre before the scan, and I was listening to Dusty Springfield’s Greatest Hits. I can’t listen to her anymore.
A young, newly qualified sonographer did the scan and she was lovely. The first thing she did was show us the heartbeat. Then, she spent around 20 minutes scanning my bump, before telling us our baby was being awkward and wouldn’t change position for her to get a good picture. Could we walk around for half an hour and come back? I had no reason to believe this wasn’t the truth, but now I know different.
We returned to the clinic and I could see the sonographer in a room with another sonographer, pointing at some pictures. Both were present when we were taken back into the scanning room, and the second sonographer told us there was nothing wrong, but she just wanted to help.
Five minutes passed before she said, ‘Please don’t panic, but there are some abnormalities with your baby. The heart is on the wrong side of the chest, there is only one kidney, and the leg measurements are short.’
I just burst into tears.
We had to wait an agonising 24 hours to see a consultant radiographer, who told us our baby had one of two conditions; either a lung lesion, which would correct itself, or a congenital diaphragmatic hernia (CDH). Being a nurse myself, the word hernia didn’t worry me at all; I was almost relieved as I thought, ‘Oh, that’s nothing’. Little did I know that a diaphragmatic hernia – where there is an abnormal opening in the diaphragm, allowing organs from the abdomen to move into the chest cavity – is a million times more horrific than other, more common, types of hernia.
The radiographer drew us a diagram, then gently told us if our baby had this condition, chances of survival were 30 per cent. Those words will stay with me forever.
In agony, we again had to wait a week before an MRI confirmed our fears; our baby had left-sided diaphragmatic hernia.
Chances of survival in babies with this condition are based on the development of the lungs, which cannot be determined until the baby arrives. They are also dependent on which of the organs have passed into the chest. Given the slim chance of survival, we were asked if we wanted to terminate the pregnancy but we didn’t even have to consider it; the answer was no. We had to give this baby every chance of survival.
We found out the gender and named her Chloe. Somehow, giving her a name made her seem stronger, like a real person fighting away inside me.
A final test was pending – an amniocentesis to diagnose whether Chloe had Edwards syndrome – a chromosomal disorder with which babies have no chance of survival at all. Children with this condition have kidney malformations and structural heart defects. Thankfully, the test was negative and we could move on with dealing with the diagnosis of CDH.
We tried to stay positive. We constantly told ourselves she would make it, that she had to make it. We decorated her nursery, bought her clothes; we felt if we didn’t get everything ready for her, we were accepting that she might not come home. Her nursery and toys were waiting, her Moses basket was set up with pink sheets. And we bought her the most beautiful pink rag doll.
Somehow we got through the rest of my pregnancy and the day came when I began having contractions. My labour was nothing short of horrific. I refused to have an epidural – if I had one, I wouldn’t be able to see Chloe straightaway because doctors advise you against walking immediately after. So I battled through 71 hours with just gas, air and a couple of painkillers. Instead of just my husband and a midwife, I had a room full of people as I was pushing. A neonatal intensive care team stood by the resuscitation machine.
At the last minute, I was rushed into surgery as Chloe was stuck. A spinal block, episiotomy and forceps later she arrived, not making a sound. She was placed on my belly for just a second before she was whisked away, but the neonatal team paused for a few seconds as they wheeled her out, so I could see her; she was lying in the hospital cot, a mask pumping oxygen into her little body, a bandage around her tiny head, her eyes looking up and blinking.
There was little Chris and I could have done at that time except hope and pray that she would be fine. Somehow, despite the devastation of her being taken away, at this point I still thought she would be OK.
After what felt like forever, but probably wasn’t very long at all, the doctor came in with a ward sister. Again, my nursing experience told me all I needed to know; when a doctor comes in with a nurse, the news is never good. He didn’t even have to say anything, I just knew. Our worst fears were being realised.
Chris and I both broke down when he said they were struggling to stabilise her on the ventilator. ‘We think the chances of survival are very low; the next 24 hours would be critical,’ the doctor said. Our parents came in and all I could say was, ‘She’s going to die’. Even the midwives were in tears.
Although they shouldn’t have done it, they scooped me into a wheelchair and took me to our daughter. She had been heavily sedated and was lying motionless. I was not allowed to hold her and all I could do was watch my little baby fight to live. The next three days were a roller coaster. Chloe survived the first night, only for us to be told the next day that her situation was critical. She was placed on an oscillating ventilator and given nitric oxide – to help very premature or ill babies whose lungs can’t function on oxygen – so she could be stabilised. She’d have to be stable enough to be transferred to a normal ventilator and taken off the nitric oxide before any surgery to correct her condition could be considered.
I guess I was in denial because I kept hoping Chloe would be fine. We watched and waited, but there was no improvement. On day two, Chloe stopped passing urine. On day three, we finally saw a glimmer of hope; the doctors had managed to reduce the oxygen and nitric oxide, she’d started passing urine again and there was even talk of feeding her. We finally felt like she might actually have a fighting chance.
At 11am, my mum arrived so Chris and I went into the parents’ room for a break while she sat with Chloe. But just 10 minutes later, Mum came rushing in to tell us the machines were beeping, and that was it; the start of the end.
Chloe’s oxygen levels dipped and dipped and dipped. The doctors told us there was nothing they could do. Our families came in to say their goodbyes; Chris and I bathed and dressed her. Nurses took her hand and footprints and a lock of her dark brown hair. Then they switched off her life support and placed her in my arms. I’d asked them to keep her sedated; if she had opened her eyes after the machines were switched off, I simply wouldn’t have been able to bear it.
It was the only time I held my baby girl, and she died instantly in my arms. I held her, kissed her and told her how much I loved her.
I’ve heard the term heartbroken before but always considered it a myth. Now I know it’s very real. The first few weeks after Chloe’s death were horrific; I’d never experienced pain like it. It was almost physical. I couldn’t see a future, couldn’t see past the pain and had no idea how to cope. When she left, a piece of me went with her.
Everywhere I looked, I saw newborn babies. Other new mums were putting congratulations cards up, having visitors, showing their babies off. We were picking a spot in the cemetery, planning a funeral, registering our daughter’s birth and death at the same time. Our little girl was laid to rest with the beautiful pink rag doll we’d had waiting for her at home.
I was distraught and felt as though my life had been ripped apart. I didn’t believe in anything any more; what was the point? I found myself feeling bitter and hating the world. I was a mother without a child. I was lost, and losing myself further by the day. I think my husband would have waited to have another child, but for me, having more children was the only way I could cope. I needed a baby in my arms. Not a replacement for Chloe – nobody could ever replace her – but I needed to feel as though my life had a purpose. I don’t think I would be here now if I hadn’t fallen pregnant again.
Naturally, I worried our second and third babies would have CDH as well. Although we were considered high-risk, this was only because we’d had a neonatal death; there’s no more risk of a subsequent baby having CDH than any other one. This didn’t stop me from worrying about it, or worrying about everything else though. Losing Chloe left me a very anxious mother.
The day my second daughter Lyla was born a year later – in 2010 – and placed in my arms, screaming at the top of her lungs, I felt the most overwhelming love and happiness, something I never thought I’d experience again. It was a strange feeling, as I made comparisons. Lyla looked just like Chloe, as did my son Harry, who is 20 months old, when he was born. They are simply amazing and I’d be lost without them. They help me to deal with Chloe’s loss, and they know all about her. Lyla’s middle name is Chloe.
Some good came of the horrific days after Chloe’s death. The neonatal unit had cared for her so amazingly well, and were so wonderfully supportive, we decided to begin fundraising to help the unit and also ensure Chloe’s memory would live on.
Despite the wonderful care we received, there were elements of the unit environment that needed improvement, such as the parents’ room and the special room you’re taken to after your baby has died. We’ve been able to help redecorate rooms, provide new textiles and soft furnishings, buy new Moses baskets and toys, and also raised enough funds to purchase two new incubators for the unit, both of which bear plaques with Chloe’s name.
I’ll always feel the same about Chloe’s death. People say time heals, but I don’t believe it. You never heal, you just simply learn to accept what happened because you have no choice, but you’re never the same.