T.O.P. Losing a much-wanted child, by guest writer Hayley Manning
I had the pleasure of meeting Hayley for the Shapes Of Grief podcast last week. Hayley, I can safely say, is quite an exceptional human being who has experienced tremendous loss in her life. In this blog post, Hayley talks about her pregnancy with baby Luna and the death of her much-wanted child. Hayley writes about her experience of multiple miscarriages and Luna’s death in her blog linked below.
T.O.P. That’s what I saw typed on my notes as I was sat across from the Registrar. She was talking to me about my latest missed miscarriage, what my options where, what they could do for me, etc… T.O.P. It took me a moment to figure out what this meant, and then I realised: Termination of Pregnancy. Luna. I had stopped listening to the doctor. I was too busy dealing with the gut punch those three letters stood for. Medical terms can be so stark and cold. What I really wanted to do was stop the doctor mid flow of telling me I could bring in any tissue samples, once I actually started to miscarry and they’d send them off for lab tests, and stab a finger at my notes to tell her “That’s Luna, we wanted her! We were fighting for her, we really were! We were on her side the whole time!”. T.O.P.
When I went for my 12 week scan with Luna, we’d already experienced a missed miscarriage once before and I’d had two other early miscarriages. By then we knew that just because you make it to a 12 week scan, doesn’t mean you’ll be walking out of that room with the news you want, clutching your first smudgy photographs of your baby. We were apprehensive, but at the same time felt we’d had our quota of unfortunate and painful experiences, so surely it would be fine, right? We had just spent the whole weekend in hospital with Benjamin who had become very ill with a chest infection. I remember asking one of the nurses earlier in the morning whether we’d be able to get out of the children’s ward in time for my scan. They discharged Benjamin around 10am, my scan was booked for 11am.
We made our way to the other end of the hospital, into the maternity building. It was a quiet day, it was the weekend after all, I remember feeling surprised that they did scans on the weekends. It was grey and wet outside, very deary, but we were excited. Benjamin came in the room with us. I could tell the technician wasn’t particularly pleased about this, it’s a tight squeeze in those rooms…and she knows what can happen. Charlie didn’t want to wait outside and leave me in there by myself, so there wasn’t really anything that could be done. I got up on the table, she squeezed the warm gel on my abdomen and she placed the wand on top. She started to move the wand around, looking at the screen, saying nothing. That’s what gets you, the silence. I knew. There was something wrong, the baby had died, it’d happened again. When she did finally speak, she said “I’m sorry, but there’s a problem with the baby.”. All hell started to break loose, it was rapidly descending into chaos. I had started to cry, Charlie was gripped with fear and Benjamin sensed the mood shift immediately (he was only two and a half). I said, “Is it dead?”, I was not prepared for what she said next “No, it’s alive, but there is a problem. There is too much fluid, there are cystic hygroma’s, at least one, but possibly two on the baby’s neck.”. Of course, I had no idea what this meant, and she wasn’t giving much more away (I get it, she’s not a doctor). Benjamin was by now starting to scream, he picked up on our distress and was confused, he wanted to get out of Charlie’s lap and I’m stuck to the table as the technician continues to have a look and take pictures. I wanted to run. I practically shouted at Charlie to get Benjamin out of the room, he didn’t want to leave me, but I couldn’t have Benjamin in there any longer. I could hear Benjamin screaming down the corridor as Charlie carried him away “No, no, muuuuuummmmmyyyy!”. I lay there, my head swimming, panicking – I felt like shouting “Stop!”. Meaning, I couldn’t take what was happening, therefore it had to stop happening. It didn’t. We went to another room, to have blood taken. The midwife was calm and gentle, thank God. She steadied us a little. She explained we’d be called to make an appointment to see the consultant in London.
Fast forward a little. We calmed down, we had further scans and tests (where they stick a needle into your abdomen and take out some cells from the placenta): Turner’s Syndrome. A common sex-chromosome problem. We researched. It’s not related to age of the mother (or father), not genetic, a totally random thing. Can happen to anyone, but it happened to us. Babies with Turner’s are female, they have only one X chromosome. It’s a spectrum disorder, like Down’s Syndrome. It means either you could be heavily effected by the way it impacts the body and brain, or lightly effected. There are plenty of Turner’s girls and women walking around out there, living relatively normal lives. You may know one and not even know it. This gave us hope. Ah, but those babies discovered to have Turner’s during routine scans are less likely to be one of the more lucky ones and make it to a live birth. They are more likely to have severe heart defects, which is where all the fluid comes from and the characteristic cystic hygroma’s on the sides of the neck. The fluid is a problem. Too much fluid and organs can’t develop properly, lungs being one of the most important organs. We decided to wait and see, give Luna more time, see if the fluid reduces over time, sometimes it does…she’d always have Turner’s but we felt we could cope with that, we loved her, we’d give her a chance.
We discussed our “red line”. Basically, if the doctors told us she had little to no chance of being born live, and surviving, we would reconsider our wait and see approach. We kept going, one day at a time. The specialist midwives were fantastic. They had all the time in the world for me, I could (and did) call them whenever I wanted to ask a question or have an understanding ear to listen to me. I alternated between appointments with the midwives and appointments with the consultant in London. I remember one of my midwife appointments with Sally, I wasn’t having a scan, they were more about checking me out, not so much Luna. But I asked Sally if we could have a listen on the Doppler, I needed reassurance that Luna was still hanging in there (scans were every two weeks, eons apart). She happily obliged. Luna’s heartbeat was strong and she kept swimming away from the machine, “mischievous!” I thought. It was comforting to know her heart sounded strong, maybe, just maybe it’ll be strong enough to pull her through. By this time, I had started to feel her “fluttering”. When we had found out she wasn’t healthy, one of my first fears was: “but if we let this go much further, I will start to feel her.” I remember saying this to Charlie and watching him visibly pull himself in and suck the air in through his teeth – he had a pain reaction to what I described. Now that it was happening, I relished it. She was there, she was living…
We had another scan. I could see what was happening, I didn’t need a medical background to see that the hygroma’s were huge, as big as her head. They weren’t diminishing, they were growing. But there was more. At least one hole in her heart (suspected, but now confirmed) and too much fluid throughout her body. The consultant pointed out her hands and tops of her feet, showed us the layer of fluid under her skin that was making her look puffed up, bloated. Finally…her lungs, completely encased. The thick black line all around both lobes indicating yet more fluid: “They are compromised”. Charlie had been making notes all this time, he stopped and looked up at this, “but if you can fix her heart…” (we’d been researching this), “No. Without the lungs, you can’t fix the heart.” And that was it, our red line. “I still think you’ll miscarry.” (he’d been telling us this from day one). “But, if she did make it to full term and was actually born live, she wouldn’t survive. She may live for a few hours, maybe a few days. No more.” No more.
I practically ran out of the hospital. I left Charlie to deal with booking our next routine scan, “Just in case” the doctor had said. I couldn’t stay in there another moment. I left my mittens in the back of the cab when he dropped us off at the tube…I realised quite quickly, Charlie made to try and flag him down to get them back, I stopped him, it didn’t matter. Nothing mattered at that moment. We got home, we talked about it some more, I called the midwives at my hospital and asked to have a meeting with the bereavement midwife. We had that meeting, we discussed what we’d been told about Luna, the consultant in the room agreed with her colleague in central London, chances of survival are slim to none. Things were only heading in one direction. If Luna was going to be well enough to be born and live, the fluid would have started to recede by now, not increase. We were shown the bereavement suites. In the labour ward, but set away from it a little bit. This was where I was first asked if I had thought of a name. I had, Luna. “What a beautiful name.”. The bereavement midwife, Sally (a different one) was simply fantastic. She talk us through what would happen and why. I would be induced and deliver Luna. “Why not an ERPC?”, I’d had one of those before, from my missed miscarriage. “Because that’s for younger fetus’s, that have already died. And usually when we explain to parents what that involves, most agree that delivery is better.”. She didn’t need to explain any further, I understood. As much as I was horrified, in that moment that I was going to have to go through labour, I didn’t want to hurt Luna. “What will she look like?”, “Very pink/red. Sometimes a bit bruised, contractions can do that to a small baby. You’ll see the hygroma’s. She will look like a baby, just very small. I have to tell you that there could be sign’s of life.”. Jesus. Really? Like this isn’t excruciatingly painful enough. But, we had started to learn that our initial reactions of fear, panic, revulsion, would quickly give way to calm and a sense of: just take one thing at a time. We’ll deal with that if we have to, right now, just keep putting one foot in front of the other.
I was induced, a few days later. We had gone over it all again and still came to the same place: survival is slim to none. If she survives at all, it’ll be short and she will essentially suffocate. We don’t want that for her. We don’t want her to feel any pain. It’s time.
I wasn’t sure how I’d react to the labour and giving birth to a baby that I knew wouldn’t live. Would I scream and shout? Would I panic? Turns out, I was ok. I was super calm. I even, and this even sounds weird to me too, enjoyed giving birth to Luna. I’m not exactly sure what that is all about. Maybe it’s just that I knew this was the right thing to do. Maybe, it was the anticipation of meeting this little mischievous wriggler, who had been trying to get there, had the odds stacked against her, but gave it a go. I don’t know. We surprise ourselves in our darkest hours and even the smallest chinks of light can break through, if we’re lucky.
I delivered Luna quickly. The medication kicked in straight away, she was out within 4 hours. She had no signs of life. This was a relief. The midwife took all of this to indicate that Luna was ready to be born. There had been a chance that the medication may not have worked on me. They had to lower the dosage they would normally give women as I’d had a Cesarean with Benjamin. They were worried about my scar tearing. So I was given much less, with the provision to up my dose gradually if nothing was happening. No need. We stayed in hospital with Luna for three days. Benjamin visited, and Luna’s Granny. We took photo’s and generally just spent time cocooned in the hospital. But we had to leave at some point and Benjamin needed us. I made them come and collect Luna while we were still there. I had this fear of leaving the room with her still in it, it just didn’t seem right. We said goodbye, they took her away, we left the hospital. We got home and the chasm of grief opened. I lost my voice for three days, but not for everyone. I could still speak to Charlie and Benjamin and Sally. Everyone else got met with silence.
Eventually my voice came back and we started to figure out what next. We planned a funeral. Something we weren’t sure we wanted at the time, but then grew to need. We needed to mark Luna’s brief time with us, that she mattered, was loved and wouldn’t be forgotten. We needed people to see that. Sally was looking after us well, visiting me every week at the house, checking in, listening. We then got in contact with Child Bereavement UK, they were really great too and had us booked in to start seeing one of their counselors within a month. We still see Sue every month, it’s our time to really check in with one another, see where we’re at. And of course, talk about Luna, our family.
Luna is a part of our ongoing lives, a part of our family. She’s a daughter, sister, granddaughter, niece, great-great niece and always will be. Our love for her continues to grow, something I didn’t necessarily expect. Everything we did was because we love Luna. She may have been with us for the briefest of time, but her impact has been colossal. Everything has changed. She has taught us so much about life, ourselves, love, memory, family – how did such a small, poorly baby do that? Magic.
This is what should be in my medical notes. This is what ever doctor and midwife should be able to read. The story behind the T.O.P. Luna’s story. Our story.
PLACES FOR HELP:
The Miscarriage Association: www.miscarriageassociation.org.uk
Child Bereavement UK: www.childbereavementuk.org
Turner Syndrome Support Society: www.tss.org.uk