We always said we wanted 4 children, as my husband was 1 of 4 and I was an only child so loved the idea of my babies having siblings to play with. I have a heart condition that meant this plan was optimistic, but we were determined to give it our best shot! After checking with my heart specialist, in April 2014 we got the go-ahead to start trying to conceive, and just a few months later we were over the moon to find out we were pregnant. Sadly, not long after that, we had a miscarriage.
I knew it could happen, because my mum had been through it when I was young, but I hadn’t thought it would happen to me or realised how common it is; not many people do, until they experience it themselves.
We wanted to keep trying and by the end of the year we were expecting again. I tried to put what had happened before to the back of my mind, and we got excited picking out names and making plans. At 17 weeks pregnant, a routine test found a problem with the placenta, so we were quickly referred to Professor Ed Johnstone for specialist care from his team at the Placenta Clinic in Tommy’s Maternal and Fetal Health Research Centre.
Worrying pregnancy symptoms
Everything seemed fine until a few weeks later when I started bleeding, which was especially worrying having been through a miscarriage before, but doctors reassured me it was just old blood from the placenta and nothing to worry about. I’d also noticed reduced baby movements - she wouldn’t move for a couple of days, then I’d feel her, but then she’d stop again - but when I rushed to hospital, scans looked fine, so this was dismissed too; “some babies are just lazy”, triage staff told me.
Between my regular antenatal care and extra Tommy’s check-ups, cardiology appointments for my heart and haematology appointments for a blood condition, I spent so much time in hospital that my husband often joked we should book a room there! But despite seeing countless health professionals, not many really listened or explained things. I didn’t know I had an anterior placenta that would make it harder to feel the baby moving, and I didn’t know enough about movement patterns to realise that what my daughter was doing wasn’t right.
I hadn’t been through this before so I put my trust in the professionals more than my own instincts.
Knowing what I know now, I would’ve pushed harder to be listened to, but at the time I guess I was naïve. At 31 weeks pregnant, we went into hospital for the third time with concerns about reduced movements, and they told us that our daughter had passed away. While pregnant, I had been dealing with antenatal depression, and when they told me she’d gone it was like it disappeared. Everything went numb and I was just running on auto-pilot.
Grieving our baby and commemorating our loss
We named our daughter Lilith Deedee: a tribute to both our mums, Dianne and Drusilla, as we didn’t know if we’d be able to have another child to give their names to. 3 weeks after we lost her, we went to a memorial service at the hospital – some people felt it would be too much too soon, but we didn’t want to wait. There were poetry readings and beautiful songs and it was really special to hear them say Lilith’s name out loud.
My way of coping is to have a to-do list and keep busy, so I threw myself into all the practical things that needed to be done. My husband went the opposite way and was so overwhelmed by his feelings he couldn’t even bear to walk past the room at home we’d been filling with baby things. He’s normally quite good at keeping his emotions private, but I encouraged him to let me in and talk, so we could support each other and grieve together. Our first Christmas without her, I invited everyone round so that I’d be too busy hosting to think; that was the best way for me to get through it.
We’ve planted a tree in Lilith’s memory, which we visit often, and we played ‘Baby Mine’ from Dumbo at her funeral so watching that film together is another precious way to remember our little girl. Every year we celebrate her birthday with a chocolate cake with mint icing, because I had such a funny craving for those flavours when I was pregnant with her, and each Christmas we add a decoration from Lilith to the tree and donate to Tommy’s in her name.
Tommy’s bereavement midwives Emma and Vicky arranged counselling for us both, and we also had private sessions individually through my husband’s work; his was amazing but mine had experienced loss herself and kept comparing our experiences which was not helpful. We’ve got a lot of comfort and support from speaking to other families who’ve been through similar – but it’s only ever similar, never the same. Even my husband and I dealt with it very differently, so you just have to recognise and respect that. Through coffee mornings at the hospital and our local Sands group, we’ve made great friends with other bereaved parents who we still meet up with years later, because although everyone’s grief is unique we’re all on that journey and we understand one another.
After 7 months of pregnancy, I didn’t have a baby; it felt so unfair to be back at square 1.
Some people were amazingly supportive, but some things really didn’t help. Naturally, people would ask questions and talk about what we were going through, but there were thoughtless comments that hurt. I remember someone telling Aaron “there’s no use sitting in the corner crying about it” and then they cried over an expensive bill! I saw from that, as well as my experience with the counsellor, that baby loss can bring out the worst in people. However, it can also bring out the best; some friends had a baby the same day we found out about Lilith, and we felt awful telling them what happened when they were so happy, but they were so understanding and took care not to overwhelm us with news of their daughter when we’d just lost ours.
I did an art project called Brave Hearts at the hospital, writing poetry and making pottery, which helped me come to terms with everything that happened – and I was proud to be part of something really powerful and beautiful. I’ve also taken part in Tommy’s research, such as the MiNESS work to understand and hopefully prevent stillbirth, and got involved with consultations to help shape the clinic’s work in future. Anything that will stop other families going through what we have is worth it, and championing the causes that may save others’ lives feels like a good legacy for Lilith.
Trying again and pregnancy after loss
Our nephew was born not long after Lilith, so that was heart-breaking, but we made ourselves go to the hospital to meet him and hold him. It took a while before we felt ready to try again, but we both still really wanted to have children, so we decided to keep going. Almost a year after losing Lilith we found out we were pregnant for a third time. Pregnancy after loss creates so many emotions; I didn’t want to get to 31 weeks because that was exactly when we lost our first daughter and I just couldn’t believe it wouldn’t happen again.
Immediately we went back to Tommy’s and this time we met Professor Heazell’s team at the Rainbow Clinic, who support families who have experienced stillbirth, as well as going to the Placenta Clinic for the specialist care we knew I needed there. We were pretty sure the baby would arrive early, given my history, so I also got a premature birth book from Tommy’s with lots of information and advice. Apart from a scare at the 20-week scan when they thought there might be a problem with her brain, which luckily turned out to be nothing, all seemed to be going well.
A lot of doctors sugar-coat things but Professor Heazell says it how it is and we really valued that honesty – after everything we had been through, we couldn’t handle any false hope.
At 25 weeks pregnant, we were in Brighton for a family wedding when my waters broke. We rushed to the nearest hospital, where a nurse who had worked with Professor Heazell before recognised the rainbow sticker on my medical notes and made sure we got back to him and his expert team for the specialist care and support we needed. Once they managed to stop the contractions, I was taken to Manchester in an ambulance, panicking that my baby wouldn’t survive the journey. As soon as I got back to St Mary’s, I started bleeding and was taken for an emergency c-section. My memory is hazy after that from being put to sleep but, 2 days after my waters broke, my daughter Maple was born.
Having an extremely premature baby
When I woke up, she wasn’t with me, and I could only see videos and photos that family had taken for me – but the next day I went into the neonatal intensive care unit to see her. Lots of people find it overwhelming to see babies so premature, but for me, it was like walking into Disneyworld, just seeing her alive and moving. She was so tiny and delicate that it was 13 days before I could hold her.
When Maple was about 5 weeks old, I asked my husband to stop at the hospital on his way home from work just to check on her because I felt like something was wrong; she’d developed a serious condition called NEC, and I was terrified because another little girl in the baby unit had passed away from it. Poor Maple was in so much pain, they had to give her morphine, but she’d had so many needles in her little body that they couldn’t get another one in her veins.
I just kept thinking: my husband hasn’t held her yet, what if he doesn’t get the chance?
Maple bounced back brilliantly and a week later, she was completely turned around. After 104 days in hospital, the day after her due date, we finally brought our baby home. She’d had such amazing care that I was scared to be the ones in charge and worried we’d do something wrong. As we first walked into the house, her oxygen tube caught on the door and got pulled straight off! You quickly learn how to cope with things but there was a lot of anxiety and stress.
Finding answers and making plans
We met with Professor Heazell to go over what had happened in the pregnancy, and he said that if Maple was born even a day later she would have died, so we feel incredibly lucky. He showed me a picture of my placenta and it was like something from a horror film – I’ve seen healthy placentas and it didn’t look like that at all! He couldn’t say for sure what had happened, but thought it could be linked to a Fontan procedure for my heart condition that changed my blood circulation; we looked it up but found less than 10 studies on it, which is why I think the research Tommy’s does is so important.
When Maple was only a few months old, we met experts from the Placenta and Rainbow Clinics to talk about a plan for next time. Some people asked if we were sure we wanted to go through another high-risk pregnancy, but we still dreamed of having more children. Just after her second birthday, we felt ready to try again, and within about 6 months we were pregnant. The Tommy’s team reassured me that I’d have closer monitoring throughout this pregnancy, more scans at earlier stages, and I was referred to the Preterm Birth Clinic as well as Rainbow and Placenta just to cover all bases.
I discovered I had an infection called Group B strep, and in researching this I learned that Google isn’t your friend, especially if you’re pregnant and anxious! Now I only go on the NHS and Tommy’s websites because there’s so much misinformation that can scare you. Apart from that, the pregnancy was very smooth; once I even went to hospital because I was so not used to everything being normal that it was troubling me! After last time, from 22 weeks we always stayed near the hospital, and had a bag packed ready in case I suddenly had to go in – but I ended up being in hospital for a week before giving birth anyway, as the baby’s heartbeat had to be monitored twice daily.
Parenting after loss and explaining to siblings
Last June, we welcomed our son Lycan, who was also born early but managed to make it to 30 weeks and 6 days which I was really pleased about. We didn’t need to spend long in hospital so 3 weeks before his due date we came home. Physically I was recovering from the c-section, but emotionally it was really hard too. I had nurses visiting to dress my wound and the NICU outreach team came to see him a few times, but actually I was very anxious and scared because he seemed to be doing too well; I just wasn’t used to having a healthy child. He was perfectly well, so I didn’t want to bother the GP and I was reluctant to burden friends with my anxiety, but I just couldn’t get it out of my head that something must be wrong. I’ve since learned that Tommy’s has a Parenting After Loss support group, where I can go any time I’m worrying and wondering if things are normal.
After my son was born, we made the difficult decision not to try to have more children, as pregnancy has been so difficult and dangerous for us.
Lycan’s now a thriving 18-month-old, and Maple just turned 4 – so at the age of asking questions and starting to understand. Even before she could talk, if we were feeling sad about Lilith, she’d sense it and cry. She’s always known about her big sister, and was confused when we told her she was going to be a big sister herself because she didn’t think she could be the big one and the little one! We have some books from the bereavement midwife that we read together, and we just talk about it as a family. She’s asked why we can’t see Lilith if she’s always with us, and even had a dream about it which actually answers that question perfectly: she dreamed that a doctor told us “you can’t take Lilith home but you can take her memory home”. Our firstborn daughter will always be with us in our hearts, and thanks to Tommy’s we have two babies here in our arms as well.