‘It’s worked!’ I said to my husband Simon, one cold February morning holding out a white stick for him to see. We both stared at the two lines; one fainter than the other but unmistakably there. ‘I’m pregnant.’
I had not expected to fall pregnant so quickly, for no other reason than I knew it could take couples up to 12 months, but here we were, on the first month of trying. Shock soon gave way to excitement, and we booked an early scan at seven weeks, where we saw the beautiful little heartbeat of our first baby. We also found out I had a large uterine fibroid; something I had not heard of before, but were about to become very familiar with. But we were assured it would be
‘no trouble.’ On her scan picture it appeared she had a large paw, like a Monster Munch crisp, and so we had our nickname for her.
At around eight weeks (after telling both sets of our parents) I had some bleeding – not loads but enough to worry me and so I went to my GP who sent me to the Early Pregnancy Unit in our city. Here I was given another scan, and I felt like a bit of a fraud: after all, I had just seen our baby, what if the technicians thought I was just trying to scam another look? But the baby was the least of my worries.
The EPU is part of the NHS services and so a bit more thorough with the scans. While they did confirm a fibroid, they also found a large ovarian cyst, the size of a football (soccer ball) attached to my right ovary – I am still unsure how the private scan missed this! I was referred to yet another department, this time surgical. It was agreed that I would have to undergo major abdominal surgery at about 15 weeks pregnant as I was at risk of it rupturing.
It sounds silly now, but I was strangely calm about the whole thing. However, when the consultant told me he would be taking my ovary along with the cyst he seemed surprised that this hadn’t occurred to me – ‘Of course it must come out’. So, at 15 weeks I returned to the hospital to have the operation. I was allowed to hear the baby’s heartbeat before it started, and I got a bit tearful thinking of how tiny they were and how they would cope with the anaesthetic and trauma of me being cut open so close to where they were nestled.
A few hours later I woke to a positive result: both the cyst and the ovary were out; I was several pounds lighter and me and baby were doing well. I had the next six weeks off work to recover, and it was during this time that I began planning life with our child. From eight weeks until 16 I had felt my life on pause, not wanting to celebrate when everything was so delicate. But surely the worst was over, and the preparations could begin!
At the back of my mind was the thought that our little one was quite small, less than the 50th percentile, but then lots of babies are small. I had assumed that, as I am quite tall, that our baby would be equally large but I was told not to worry about it. At our 20-week scan, however, the worry set in properly.
The technician couldn’t get all the measurements needed and said that the baby was measuring a couple of weeks behind, and we would need to be referred to another department – Fetal Medicine. I remember seeing a sign for this place at one of our first visits, and wondering what medicine could be given to a baby in utero. We had to wait to the following week to be rescanned – it was an awful wait. I was now nearly 22 weeks, and at our consultant scan they confirmed our baby was small, but also had no fluid around her. They talked through our options of continuing, but it would be unlikely they would survive, or we could end the pregnancy sooner by having a TFMR – either way, it was made clear to us this baby wouldn’t live.
Simon and I went home in a daze. We weighed up the options and decided for us it was kinder for our baby to end the pregnancy so there was no risk of them suffering if there were to be born living, because no fluid meant their kidneys might not be working and their lungs wouldn’t be able to practice breathing, so they would suffocate if born alive.
We had to go to another scan later that week to confirm our decision of a TFMR. However, whilst we were expecting to end the pregnancy, the consultant rescanned and found that the baby did in fact have enough amniotic fluid, and was surprised that she hadn’t been able to see this on the previous scan. But it gave us hope.
With the fluid, it meant she had a chance – it was at this scan we also found out she was a little girl. We decided to continue with the pregnancy and keep monitoring her growth, hoping she would get to a viable weight. We had always been told 24 weeks was the minimum for a viable (if assisted) pregnancy – but I didn’t realise that for any hope of survival a baby had to be 500g at least. Our little Monster Munch was measuring around 200g.
We continued with scans for a couple of weeks, each time being told she hadn’t grown much. It was frustrating to not be able to do anything. There was no magic formula or drugs that could help her, it was very much “wait and see”. Then on 19 August 2022 we went for a scan. I was 26 weeks. She had gone.
I can’t really recall how we made it home from the hospital, how the following day we went shopping to buy maternity pads and a small bunny for our baby, how we managed to continue at all knowing she had died.
I gave birth to our daughter in the early hours of 21 August 2022 in the bereavement suit at our hospital. She was so tiny, but so perfect. We stayed with her all day, trying to fit a life time of love and memories into less than 24 hours. We held her, sang to her, read to her, taking in every little bit of her. My parents were able to come and see her, and the hospital Chaplin gave her a blessing. We were given a hand and foot print to remember her by, although I didn’t realise until afterwards it was only one hand and one foot – something I deeply regret now.
We were told by the hospital that her death was most likely due to the presence of the fibroid which had been stealing the nutrients meant for her. If I had further surgery to remove that, then surely a second pregnancy would be fine? We still opted for a full postmortem just in case, and offered her samples to be used in further research, hoping our loss could help others.
The six months’ time whilst we waited for results were agonising. I was on maternity leave but with no baby – I floated between bed and sofa, barely eating, my face red and puffy from all the tears. Friends and family tried as best they could to reach us, but I was consumed by anger and longing and it was hard to want anyone other than my baby and Simon.
We named her Maggie. I couldn’t comprehend how she was gone. I became fixated on the fact that she needed me, wherever she was, remembering stories of how people talk about seeing their parents towards the end of their lives, but there was no one to guide Maggie into whatever was next. I both desperately wanted to be pregnant again, but I wanted the baby we lost. However, because I knew I had to have more surgery, we weren’t allowed to try again until that was resolved. In the grand scheme of things, I only had to wait eight months until I had the fibroid removed. I cannot fault the support and speed in which the hospital did things for us.
However, a month before the surgery we found out that the fibroid was not the cause of Maggie’s death. In our consultant review we were told Maggie died due to a rare complication with the Placenta – MPFD and CHI; something that affects 1 in 10000 pregnancies but sadly is highly recurrent.
The consultant was kind, but obviously had no experience in it. She suggested that, next time, I take aspirin and have ‘a few more scans’. She claimed the likelihood of it happening again was ‘only’ 1 in 3. These were statistics we were not willing to take for our child. So, I went away and researched everything I could. The one benefit of becoming a loss parent was the community I found online, and a particular mama who lost her little girl Anaya a month
before Maggie was a huge support. She’s from a medical research background and helped me scour papers relating to MPFD.
I found that, in St Mary’s Hospital in Manchester, a professor called Alex Heazell had worked with over 60 women to help them conceive, grow and deliver healthy living babies with a new drug protocol. I first came across him on a short video put out by Tommy’s baby charity, whereby he described how the drugs worked and how another woman with the same condition had lost 6 babies but with his protocol went on to have a healthy living daughter.
The drug protocol is not yet approved by the NHS so I needed a referral to him, which my consultant was happy to give, in order to access the drugs.
Professor Heazell immediately put us at ease. He explained the drug protocol and that it wasn’t a guarantee of success but had proved positive in nearly 90% of the 60 women he had treated. This seemed to us to be much better odds than the 1 in 3 chances of recurrence if we did nothing.
So now all we needed to do was get pregnant. I first had to wait six months to heal from the fibroid removal, and we concentrated on trying to get ourselves mentally and physically better, but it was a struggle. I shan’t bore on with the details of trying to conceive, but I will say that the disappointment that follows a negative test or a period arriving restoked all the feelings of loss, hopelessness and anger that losing Maggie had done a year ago.
After my surgery and to give us something to pour our love into, we got our dog Freyja – our grief puppy. A beautiful golden retriever who will never know how much joy and healing she has brought to our lives. It was hard raising a puppy and being in the pits of grief, but nearly 18 months on from getting her, she is one of the best things we have ever done and will forever be grateful for her happy little face. Freyja is our rainbow – bringing us hope and a drive to get out
and do things again.
In February 2024 we found ourselves staring at another white stick. Barely daring to believe it. I was pregnant again. I quickly got put on all the recommended drugs, and arranged various scans and appointments with a whole host of specialist midwives, perimental heath psychologist, GPs, fetal medicine consultants and of course Alex Heazell’s team in Manchester. Alex Heazell has such a great passion and believe for the families he has, he was and remains a positive and confident force, and I am entirely grateful for the handwork of him and his team.
Between 18 and 34 weeks he saw us five times, personally scanning me and reassuring me that our baby was growing as expected, he has done more to offset my anxiety than anyone. PAL has been horribly hard and horribly beautiful. We have focused on celebrating as much as we can, taking photographs, being present, I even joined an aqua natal class, mixing with pregnant people for the first time since Maggie died. We are expecting our second daughter in
October this year. Simon and I will be eternally grateful for Professor Heazell, St Mary’s and Tommy’s (and our own hospital in Southampton). As we get nearer the end, my heart is in my mouth.
In 2023, to celebrate Maggie’s first birthday, we hosted a Tea Party and quiz for Tommy’s raising £2864. My sister Eleanor went from occasionally running 5ks to running the Manchester Marathon in April 2024 in memory of her niece, raising an amazing £1500 for Tommy’s and I have never felt so overcome with pride and love for her as when she crossed that finish line.
Simon and I are days away from our own marathon of PAL now. Some days I cannot comprehend a different outcome, even whilst that is all I am hoping and longing for, bringing a living baby home seems so unrealistic. We have made all the major purchases and decorated her room. I have been getting Freyja used to the prospect of a baby in the house and of course taking in part in Journey for Jasmine.
I wasn’t sure if I wanted to document the pregnancy, but wearing the skirt, surrounded by the beauty of the New Forest, my husband and Freyja I am so glad that I took part, and I feel so connected to all those ladies and families who have worn this skirt, walked the path of baby loss and are still moving forward with their grief and joy.
Update: Our daughter Phoebe was born alive and well on 20 October 2024. We are settling into life with a newborn, navigating joy and grief and watching how besotted Freyja is with her new friend.
Photos taken by Kelly Merritt.
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