“I couldn’t come to terms with how we were treated”
A few years ago while living in Spain, Charley lost her baby at 16 weeks. To make matters worse, during this time, the doctors were cold and not empathetic at all. The pain of her experience will never be forgotten. It has shaped her as a person. Her heart goes out to everyone who has been affected by the loss of a baby, no matter at what stage. She shares her story here, to remind us that none of your stories are forgotten.
All I had ever wanted was to be a mum, and so I was so excited when I became pregnant. I went to my 12 week scan on my own as my husband was away with work. I could immediately see our baby and she was waving, I remember feeling so relieved. The obstetrician asked me if I was alone, and I just thought he was making polite conversation. In hindsight the alarm bells should have started ringing. He told me there was a problem and pointed out a bigger than expected nuchal measurement, an absent nasal bone and something wrong with the ductus venosus, which shunts a portion of the umbilical vein blood flow to the baby’s heart. He told me that all of these are signs often seen in a baby with a chromosomal ‘problem’, such as Edward’s or Down Syndrome.
Floored
At the time I think I must have seemed really blank. It was as though my mind couldn’t absorb the news. It was only when the nurse started stroking my hand that I realised it must be bad. This act of kindness set me off. It was the only kind and empathetic moment I recall in our whole experience. The doctor told me that in his experience based on what he’d seen, he expected our baby had Down Syndrome. All of this was before I had even had results of a combined screening. I asked what our options were and I remember his reply so vividly as he just said ‘termination, you are young, you can try again’. This floored me and set me off in a whole new flood of tears as I had gone from happily looking at our wriggling, waving baby to suddenly being told my only option was termination in the space of just 15 minutes. I knew that I did have other options and that termination was definitely not my only option, but when a doctor is telling you that is the case it’s so difficult to believe otherwise. I left the clinic feeling devastated and spent the rest of the evening in a daze. When I was relaying the news I felt like I was talking about someone else.
“‘You are young, you can try again’, he bluntly said”
Armed with information
I went back to see the obstetrician 5 days later to get the actual results of the screening. In between these appointments I’d found positivity and became proactive, speaking to a fetal nurse specialist and a midwife with lots of knowledge on NIPT (non-invasive prenatal testing), as I was really reluctant to have invasive testing due to the risk of miscarriage. They both gave me so much more information, which really helped me process the news. Both reassured me that actually there was still hope. So, going into this appointment I felt much better and was armed with information on all of the different outcomes. Although I expected that the results would come back ‘high risk’, it was still a shock for me to see that I was in fact ‘high risk' for both Edward’s and Down Syndrome. Once again, hope was shattered. Whilst I was there, he scanned me and I jumped at the chance as I just wanted to see our baby again. I felt I needed to soak up seeing her as much as I could. It was like a tiny moment of happiness.
Losing all hope
This time the nuchal measurement had increased further, there were hydrops and still no sign of a nasal bone. Everything was constantly so negative. I believe it was at this point that it truly started to sink in that something was wrong with our baby and I was losing all hope. Again, he asked if we would be terminating the pregnancy and for the second time in a row I left feeling down-hearted and negative. We ended up agreeing to the invasive testing as it was the only way to know for sure what was happening. I wasn’t allowed anybody to be with me during the procedure, so I was alone. I had the transcervical CVS, which I found very traumatic and painful and they had to repeat the test as they didn’t get enough the first time. They told me that our baby’s heartbeat was slower than expected and there was a risk her heart would stop. I was supposed to get the results within 5 to 7 days.
Rollercoaster of emotions
Just 36 hours later the call came. Once again the words have stuck with me, ‘I am afraid it is not good news’ and my heart dropped. I was waiting for her to say our baby had Edward’s but instead she said the baby has Down Syndrome. We had already experienced such a rollercoaster of emotions and feelings that I had decided in my own mind that Down Syndrome was the good outcome of the options on the table. I wish she hadn’t decided for us that it was bad news. The only positive from this test was that we learnt she was a little girl – we named her Sophia. I felt so emotional as it was one of the only normal things we got to experience and I already had such a strong attachment to her.
Fighting to be her voice
I went back to the obstetrician at 14 weeks and he already knew my results. I will always remember every detail of this appointment. His very first words to us were ‘so you are going to stop this pregnancy?’ I found this so upsetting as I couldn’t face even considering ending the pregnancy unless I was sure she couldn’t have a good quality of life. Our baby deserved a chance and I felt like we were constantly having to fight hard to be her voice, as it appeared she had been written off by everybody else as not worthy of a chance. We told him we wanted to know about any complications before we made any decisions. Another scan followed. One of the worst I have ever had. During the scan he said ‘you really want to continue with this pregnancy?’ I just stopped saying anything, I couldn’t. I couldn’t make our position any clearer.
“It was awful sitting in a waiting room full of heavily pregnant women, I felt sick with dread ”
Constantly being pushed
During this scan, the doctor told us very directly that our baby was going to die. It was truly awful. My husband tells me now that he has never seen me act in the way I did at that appointment. He said I was scary. I didn’t consider myself as scary, but I did totally shut down. All I could do was stare at the blank wall in front of me. I just couldn't process it. My husband asked what would happen if we didn’t make a decision now, and we were told it would mainly just get worse for me. He said he’d see us at 16 weeks and begin trying to assess for other complications at that point. I just couldn’t cope with constantly being pushed and pushed to end our baby’s life, it was relentless. I remember the time following that appointment so well. I walked in silence to the car. We stopped at Burger King and I remember crying, trying to eat a burger I didn’t want. Everyone around me was so happy, that made me feel worse. I remember going to bed talking to her and begging her to fight.
Blank
Somehow in the days that followed I managed to find hope again. I researched all the ways I could support her and what she might need emotionally, medically and developmentally. I wanted to show the doctor I knew what I was talking about, and I wanted to be prepared to be the best mummy possible whatever she needed. And then, the 16 week appointment arrived. It was awful sitting in a waiting room full of heavily pregnant women and I felt so sick with dread. He scanned me and the minute I saw the screen I knew she’d gone. She looked different, curled up like she was just sleeping. He just said ‘there is no heartbeat’. I wasn’t able to cry at the time. I just felt blank. He told us that I’d have to go into the hospital to have an ‘abortion’. I had one last night with her at home. I felt so protective of her and I am pleased I got that night as it was all I was going to get. It was my own time to say goodbye.
‘This is normal’
Taking my hospital bag out the door with me the next day was pretty awful, knowing that we’d be returning home without our baby. We waited for ages when we arrived, and eventually I was given some pessaries and we were left alone. Then 6 hours later they gave me a second pessary and things started to happen. I was getting waves of pain, which at the time I didn’t understand were contractions. No one checked on me to see how I was. In the end my husband demanded to see the obstetrician as I was in a lot of pain. The response was just that this is normal. I am so thankful that he persisted though as it turns out Sophia had become stuck and that was causing my pain. No one told me I’d have to push, I assumed that only happened much later on, but I did have to. No one prepared me that I’d have to deliver my placenta too. I'd been fighting against my body as I didn't want any of this to happen, so that made it all worse.
“My biggest single regret is not fighting what the doctor said”
Freeze mode
When she arrived I had wanted to see her, hold her and say goodbye. I assumed I'd just be granted my wishes. When I tried to look at her the doctor told me it was better not to. My biggest single regret is not fighting that, but I just wasn’t able to at the time. I think I was in freeze mode. I have never made peace with this. They put her in what I can only describe as a white paint bucket and took her away. It was all so cold and clinical and reinforced my feelings that nobody cared. They did a post mortem and then after that I don’t know what happened to her body. I simply have never been able to get closure on this and it has hugely affected me emotionally. I was living in Spain at this time, but if I had been in the UK I know I could have decided what happened and I could have known she was at peace. I’ve always struggled to believe she is at peace as I can’t bear to think where she ended up. I felt like I completely failed her. This was early in the evening, and nobody checked on me for the entire night. The next morning they let me go home and there was no other support available.
Empty and hollow
The rest of that year was horrible. I was in a bad place. I still received emails updating me on milestones and someone congratulated me on being pregnant when I wasn’t anymore. I just felt so empty and hollow, I just wanted Sophia so desperately. Although I've always been open about what happened, I didn't feel able to tell people how much I was struggling. I have had to have a lot of baby bereavement counselling, as well as rely on the wonderful services offered by Sands because I couldn’t come to terms with the way we were treated, and the cold way in which Sophia was treated when she arrived.
Never forgotten
Six months after losing Sophia, I had another miscarriage at 8 weeks. I have never felt anger in my life like I did after that. It was such a strong feeling. Since then we have been very blessed to have a rainbow baby, and for her I will always be truly grateful, but the pain of my past experiences will never be forgotten. It has shaped me as a person and actually I wouldn’t change who I am now. I think it has made me kinder, more empathetic and I have such a strong desire to help others who are pregnant with their rainbow. My heart goes out to everyone who has been affected by the loss of a baby, no matter at what stage.