Welcome to our Neurodiversity and baby loss mini series. We are sharing stories from neurodivergent people across the world who have experienced baby loss.

The purpose of our Mini Series is to give people a platform to tell their stories – anonymously if they wish to – and to help break the silence around baby loss.

Victoria’s story:

Victoria is a doula and is neurodivergent. She tells her story of ectopic pregnancy and baby loss. 

In August this year I spent an amazing month back home in Scotland visiting family we had not seen for over a year. It was blissful. Thanks to all the help from very enthusiastic grandparents, I felt physically better and more rested than I had in a long time. But during those weeks I experienced some very strange bleeding after my period. Sometimes it was pink or brown and watery, other days I had a full bleed more like a period (although I wasn’t due for some time), and then within a day it would abruptly stop again.

I was worried about why the bleeding was happening and so I booked to see a gynaecologist on my return to Paris. The gynaecologist performed an internal ultrasound and commented that the wall of my uterus was thicker than it should be, and although she couldn’t see a pregnancy on the scan, she advised that I take a test. I actually laughed out loud; to me it was just not possible.

She said that the next step would be to do some diagnostic tests but the first box to tick was the home pregnancy test, so of course I did as she asked. Three positive tests later, I sat in shock in my bathroom and emailed her. I could not believe it, and felt such a mix of emotions. Confusion, fear, and some excitement. But I had a niggling doubt that this was a viable pregnancy. I had never bled during either of my previous 2 pregnancies. And the dates just didn’t make sense.

The thought of pregnancy didn’t cross my mind once. We were taking precautions, and I’d had what I thought was a normal period after the last time we’d had sex. So it just wasn’t biologically possible as far as I was concerned.

Within a few hours of the appointment I began to bleed again, having not done so for about a week. It felt odd. Was I now feeling some relief? But definitely sadness too. Could it still actually happen? How the hell were we going to manage with 3 small children in a flat in Paris with no family support? We were already struggling. I spent the evening imaging elaborate details about morning routines and bus routes so that we could get our girls to school and nursery, but with a baby in tow. And then I’d go to the toilet and see blood again…

The gynaecologist emailed me a prescription to have a blood test to confirm the pregnancy and advised that it be repeated every 48 hours to monitor what was happening to the hCG levels. The test confirmed pregnancy but the levels dropped within the 48 hours, although not by as much as would be expected if I was miscarrying.

I had now passed a lot of blood and some tissue. I was asked to go back to the hospital for a scan, as there was concern that this could be an ectopic pregnancy. It was a difficult time for me in that waiting room. I was in the prenatal scanning clinic, surrounded by what felt to me like happy couples, who were waiting to see their babies for the first time. I knew my pregnancy was coming to an end. The question was whether or not there was any danger to my own health at this point. My mum had had an ectopic pregnancy and a Fallopian tube removed before I was born. I was terrified of surgery and the recovery that would follow. I was alone and scared. The sonographer couldn’t locate the pregnancy on the scan or any signs of where it had been, but she seemed optimistic that it may just be a ‘straightforward’ miscarriage. I was sent home again. The Gynaecologist still could not see anything on the ultrasound, she explained that she had no choice but to diagnose an ectopic pregnancy.

She described the risks to my health of the pregnancy rupturing, and prescribed a medication called methotrexate. To my shock, she then proceeded to tell me that the hospital did not have any of the medication on site, and that I would have to go to a pharmacy myself to collect it, and also find my own nurse to administer it. This is not uncommon protocol in France. But it certainly added to my stress and anxiety at an already very difficult time. It was 4pm, and she told me that I needed to have the injection today, but only after I had the results of a liver function blood test amongst others. Somehow I needed to head to a laboratory for the tests, get the results, source the drug, and find a nurse who would come to my flat in the evening to inject it. All whilst picking up my daughters from childcare and getting the dinner on. It didn’t seem possible, and I felt numb. Why was I being tasked with all the logistics of my care when I was reeling with the news of what was happening to my pregnancy?

Luckily my husband Chris had been working from home that day, so while I was at the lab having the suite of tests done, he went to our local pharmacy who helped him to find a nurse and who found another pharmacy across town with the medication in stock. We arranged to have it taxied over to our pharmacy. However the results of the lab tests needed to be reviewed by my doctor before I could have the injection, and by 10pm I still hadn’t heard anything. It was a stressful evening of waiting and a pretty sleepless night. The results were in early the next morning, and I had the green light to get the medication. I managed to persuade the nurse to squeeze me in asap, but on arrival he realised that the pharmacy had sent the wrong type of drug. We were back to square one. I’m very grateful to him as he was the first person who showed me genuine compassion about the situation. He offered to sort it out with the pharmacy himself, and to text me when he had the right medication. This took all day, and at 6pm I finally had the injection.

The next few days were spent mainly on the sofa watching trashy tv, and trying to process what had happened. I was struggling to be present with the kids and continue with all the things I needed to do, so I reached out to my Dad for help and he flew over from Scotland the next day. This was a huge relief. The kids were excited to have him here, and it meant that I didn’t have to worry about school runs, pick-ups and lots more. I was also worried that things might ultimately result in me needing surgery, so having him already on hand should that happen, was a huge comfort.

Over the next couple of weeks the blood tests showed that my hCG levels were now rapidly going down, and I no longer needed 48 hour monitoring, but would need a blood test once a week until I had a negative pregnancy test. I cried a fair bit during this time. I had noticed some pregnancy symptoms including a bit of crusty colostrum on my nipple one morning in the shower.

These were now disappearing, and I was watching my pregnancy slowly unravel with each blood test. I wanted it to be over and to get the negative test, but at the same time, I felt a connection to the beginning of life that we had made. I was saddened by some of the language that was used by others in conversations I had. One friend said ‘it was a blessing’ because we hadn’t planned for any more children. A nurse at the laboratory who took my blood said the main thing was that I already had children. Their opinions were not asked for, and were painful to receive because they didn’t validate how I was feeling. Unfortunately, the day after my Dad left, Chris, my eldest daughter and I were in a taxi when I suddenly started to feel a lot of pain low down in my abdomen. I questioned myself as to whether or not it was in my head, or if it was something digestion-related, but by the time we got to our destination, I was in tears.

I repeated over and over ‘I’m sure it’s nothing’, but really I felt that something was very wrong and I needed to get to the hospital. So we got straight into another taxi and headed there. On arrival I was asked to give a urine sample and I noticed that I had started bleeding vaginally again which confirmed to me that my pain was related to the ectopic. They quickly hooked me up to some intravenous pain relief which helped but I was still in a lot of discomfort. Chris took my daughter home to sort out childcare for both our girls and planned to come straight back.

This time spent alone was very frightening.

My body started to show symptoms of shock. I suddenly found that I couldn’t move my arms or legs, and my hands and fingers became completely frozen in the position I had been holding them. I felt tingling and pins and needles spread up my whole body. I shouted for the nurses to help me. They appeared confused as to what was going on. They spoke a little English but not a great deal, and my lack of French vocabulary didn’t help with the confusion.

I started to panic. It was one of the most frightening experiences I have ever had. They gave me some more medication to relax my muscles and luckily this helped and I started to drift in and out of sleep.

I was then wheeled back to the prenatal scanning clinic. I must have looked quite a sight to the couples in the waiting room; sat in a wheelchair in just a hospital gown and socks, drifting in and out of sleep. I was surprised that they left me alone in the corridor outside the scan room until the sonographer came to collect me. During the scan she still couldn’t locate any sign of a pregnancy, but she could see that I was bleeding into my abdomen. A few hurried phone calls were made in French which I struggled to understand. I was wheeled back to A&E to await the arrival of my doctor (who had been called in from home) and be prepped for her to perform keyhole surgery.

I was told that they needed to find the pregnancy and stop the bleeding, and that if possible, they would remove just the pregnancy, but there was a high chance that they may also need to remove my Fallopian tube.

Everything happened fairly quickly. I remember the theatre nurses being very jovial and playing around. One of the nurses threw a plastic sheet at the other one and they pretended to have an argument. It felt surreal. This lively mood didn’t match how I was feeling. I was disoriented because I had to leave my glasses with Chris and I couldn’t see much. I just wanted the sleepy feeling of the anaesthetic and for this to all be over. I felt triggered from my difficult postnatal experience with my first daughter, which ended up with two separate trips to theatre.

I came round on the recovery ward and drifted in and out of sleep. I was eventually taken to my own room, where Chris was waiting.

He told me that the doctor hadn’t been able to save my left Fallopian tube and that it had been removed. I wasn’t surprised. I had felt a quiet acceptance before going into theatre that this would be the outcome. We chatted for a bit but it was now late and he needed to go home to get back to the kids. He told me that my mum was going to fly out the next day to help us out.

I spent 2 nights in hospital. I was very grateful to have my own room after my experiences of the understaffed and very busy postnatal wards back home in Scotland. I made sure I pushed my buzzer as much as I needed to get help with going to the loo etc. After I had my first daughter, I frequently pressed the buzzer and had no response. I made a promise to myself I wouldn’t struggle alone this time.

Thanks to the amazing support I received from family and friends, I was able to treat the following weeks like a different type of postpartum. I talk to clients about the importance of physical recovery, nourishing foods and social support after having a baby. The same principles apply after loss. I slept, and spent a lot of time on the sofa watching tv. I ordered some amazing nourishing food that only required me to press a few buttons on a microwave. I spoke to a therapist, and was doula’ed by my amazing doula mentor Lisa. My mum and Chris took care of the household stuff and the kids’ needs.

I am now emerging from this bubble of recovery. I’m getting out a bit more and meeting up with friends. I’m laughing again, and enjoying time with my children. I’m sad about what has happened, but I feel ready to make plans again, and I’m excited about things to come in the future.

I think having an ectopic pregnancy can be one of the most complicated emotional experiences someone can have. I have felt an overwhelming mix of emotions, including confusion, excitement, grief, and genuine fear of death, but also relief and gratitude. All alongside the rollercoaster ride of fluctuating hormones taking place within. Whilst the physical recovery may be quick, I believe the emotional side of things can take a lot longer.

BLAW 2021 – My Experience of Ectopic Pregnancy (victoriawhitebirth.com)