I was recently asked to talk at a study day run by charity Towards Tomorrow Together on my losses and pregnancies following those losses. In August Ben and I are doing a sky dive to raise money for the charity and I wanted to share the talk I gave.
My name is Jess. I am a mother of 8, sadly only 3 of my children are living.
My journey to motherhood started in 2008. Having suffered from sub fertility issues I was about to start Clomid when I discovered that I was pregnant. My husband and I were so happy and it didn’t even cross our minds that something could go wrong. After all, miscarriages are what happen to other people.
I had a small bleed at 10 weeks. I went to the local EPU where they did a scan and showed me the heartbeat. Reassured we went home with a follow up scan booked for a week later. My husband had a meeting that day and we were confident everything was ok, so my sister in law and her baby came along with me so my other half could still get to his meeting.
That morning my life changed forever. I heard the most devastating words any mother to be can hear. “I’m sorry, there is no heartbeat”. I broke down before the sonographer had finished her sentence. My sister in law tried to comfort me, but I was asked to stay where I was whilst they fetched a doctor to confirm the news. I lay there for what seemed like forever with my baby’s image on the screen and the internal probe still inside me. I wish I’d asked for a copy of that image. I know my baby had already died, but it wasn’t until later that I realised it would have been the only physical proof that my baby existed. All I had was the many, many, pregnancy tests that I had with that magical second line on it.
I was put in a “family” room and left for 2 hours. At one point someone came in to take my bloods and on another occasion someone popped in to hand me a handful of leaflets from the Miscarriage Association. I couldn’t get hold of my husband and although I appreciated having my sister in law there, I didn’t want her living, breathing, beautiful baby in there with me.
At last someone came to talk to me and explain that as it was a “missed miscarriage” I would require an ERPC. This wouldn’t be possible for a few days so they would be sending me home and would call me to let me know when to go in. I couldn’t understand why I needed to go in to a system, along with the women who were voluntarily terminating their pregnancies, and why no one could tell me what would happen to my baby.
Fortunately, the company I worked for at the time, had private health insurance policies for its employees which covered complications in pregnancy. The private wing of the hospital was able to book me in the same day.
I remember sitting in the room waiting for the surgeon. He came in and was so matter of fact. No acknowledgement of the distress I was in. I remember asking him what would happen to my baby. He told me it would be “disposed of ethically”. I wish I’d known I could ask for my baby’s remains. I wish I’d known I could ask for a test to tell me what sex my baby was. But I didn’t know. No one told me and it was as if it didn’t matter as I was “only” 11 weeks pregnant.
I sadly lost 2 more babies at, 7 weeks and 9 weeks, before being diagnosed with Anti Phospholipid Syndrome. It’s one of 3 auto immune diseases I was suffering from at the time including Graves’ disease. With the proposed treatment of heparin and aspirin during pregnancy I finally felt that motherhood might be within my reach.
I fell pregnant with Lili in 2010. It was a bumpy start, with my progesterone levels dropping dangerously low at one point and my doctor initially refusing to prescribe the heparin, but at 37 weeks she made a very quick entrance to the world. I was desperate to have a water birth at home, but due to my high risk nature it was denied. My labour was only 4 hours from waters breaking to Lili arriving. It even took the midwives by surprise and I didn’t actually make it in to a delivery suite! She was a perfect, but a tiny 5lbs 2 oz.
My marriage broke down when Lili was 9 months old. In what continued to be a truly horrific year I was also diagnosed with thyroid cancer. In the darkness though my best friend, Ben and I grew closer and started a relationship.
We’d been friends for a long time and things moved quite quickly. Knowing that the biological clock was ticking for me and I had a history of fertility issues we decided to “not try but not prevent”. In April 2013 I discovered I was pregnant. Ben was away on business when I tested so I started looking on pinterest for soppy ways to tell your partner that you’re pregnant. Instead, though, the day before he came home I started bleeding heavily and had to tell him via email of the baby we had lost. We were both devastated, so our not trying not preventing turned into real trying.
In June 2013 I fell pregnant again. By now the rules about which hospital you could go to for maternity services had changed. I choose UCLH. As soon as I was pregnant I started on the heparin and aspirin and booked in to see a consultant as soon as possible. I felt very well looked after. As well as my consultant obstetrician, I was referred on to a consultant haematologist to monitor the APS, consultant endocrinologist for the thyroid issues and I had a mental health assessment as I was by now on anti depressants. I had early scans, multiple midwife appointments, blood tests and everything was fine. The 12 week scan was magical and we couldn’t wait to meet our baby. I was in the hospital almost every week for one appointment or other. At 16 weeks, at a routine appointment with my obstetrician, all looked good. Bloods were ok. Meds were good levels. At the very end of my appointment my doctor asked if I’d like to have a listen to baby’s heart. Using a doppler she couldn’t find one, but wasn’t overly concerned. She admitted that it was a bit early, but to give me peace of mind she could send me round to have a quick scan. Knowing that I’d already been away from the office for longer than I’d hoped I almost declined, but I was eager to see my baby again, so said yes please.
I was on my own. Ben was at his house in Essex preparing to fly to Bahrain the following day. I waited for ages, and almost gave up, but just as I was about to leave, my name was called. I knew by now that the first thing they show you when you have a scan is the heartbeat. So when the sonographer was silent and there were lots of clicks on his control panel, I knew there was a problem. Even then I didn’t think it would be the devastating news that again, my baby had died.
My step dad was the CEO of the royal college of Obstetrics and Gynaecology at the time, which is just around the corner from the hospital. He was physically the closest member of my family to me so he was the first person I called. He was there immediately. I don’t know whether his presence made a difference to the care I received, but I’d like to think that everyone who has to go through the heartache of losing a baby, is treated the same as I was.
My Obstetrician, who’d sent me round for the scan, was called out of clinic and came straight away. She talked me through my options and told me that I could be admitted for an ERPC the following morning or I could be induced and give birth to my baby. This is the only decision I have ever regretted. In the heat of the moment I chose the ERPC. To this day I regret that I didn’t get to meet my baby or hold him. My only criticism of the process that day is that I didn’t feel I had time to think about the decision or feel like I could change my mind.
A bereavement midwife took my step dad and I to a family room where she sat with us and talked me through what would happen next. As we walked to a pre op assessment I went to take the “Baby on Board” badge off my coat. The midwife stopped me and said “It’s still true.” That small act meant so so much to me. It was a world away from the experience I had with my first miscarriage.
That night I sat on Facebook with Mel talking about what I should do the following morning. What questions I should ask… blankets for my baby and many other things. It all felt like such a rush. The following day we got to the hospital very early. We were in the system. I was on a list with other women having ERPCs out of choice. I sat in the waiting room and felt like screaming that I didn’t want to be there. That I wanted my baby and that I didn’t have a choice.
Sat in the office with the registrar we waited for the surgeon to come in. His air and attitude when he walked in was that of someone who wasn’t judging me, but wasn’t condoning the act of me choosing to get rid of my baby. He picked up my file and started reading. I saw him physically crumple. He looked up gently and asked “but everything was ok at the 12 week scan?” when I nodded he just said “I’m so sorry”. After he had left I asked the registrar who was doing all the paperwork with me, if I could please know the sex of my baby. He seems shocked by this request. His shock confused me so much that I didn’t feel comfortable asking about a blanket for my baby or what would happen to their remains.
I broke down completely when the nurse who had walked us to the ward told Ben he wasn’t allowed to come any further. I sat in the waiting room with 10 other women. I was sobbing. The nurse didn’t understand. She said, don’t be scared, it’s a simple everyday surgery. She didn’t understand or just didn’t know, that I wasn’t sobbing because I was scared. If only they had a way to tell the professionals that “this patient has suffered a loss”.
I’ve never come to terms with the fact that to this day I don’t know where my baby’s remains ended up. After the registrar’s reaction to my request to know the sex of my baby, I didn’t feel confident to ask anything else. I felt that maybe I was strange wanting to know what would happen to my baby. Although, had I laboured and given birth, it would have been a different experience completely. I would have been able to choose a resting place for my baby. I would have been able to wrap a tiny blanket around them.
Above and beyond her role, by obstetrician called me to tell me the results of the post mortem and to tell me that my baby had been a boy. I felt so terribly sad that I didn’t know where he was… panicked almost. Knowing the sex made him even more real and the loss felt even more devastating.
Ben and I weren’t sure whether we should name him, but I’m so glad that we did. Henry is part of our lives every day.
3 months after we lost Henry I fell pregnant with Charlie. It wasn’t a straightforward pregnancy, I had high blood pressure, gestational diabetes, the list goes on. I had the same obstetrician, she’d offered to refer me to a colleague if I felt more comfortable with it, but I wanted to stay with her. She knew my history, but more importantly, I felt that she truly cared about me and the health of my unborn child. At 37 weeks, Charlie, like his sister, rushed into this world. We made it to the delivery suite this time, but only just!
He is now 4 and a half. It’s difficult sometimes watching him growing up, wondering if his brother would have been like him or not. Charlie started school last September. The absolute youngest he could be. In fact had he gone to term he wouldn’t be starting until later this year! I got really emotional in the days leading up to him starting. Not just because he felt too little to be starting school, but also because Henry would also have been starting school too. It’s bittersweet because of course had we not lost Henry, we wouldn’t have Charlie in our lives.
In 2016 we made the life changing decision to move to Cornwall. We love life down here. In 2017, whilst Ben was away working, I realised that I’d missed a period. I took a test and was pleasantly surprised to discover I was pregnant again. We weren’t trying. We’d kind of decided that we weren’t going to have any more children. It was Ben’s birthday and I sent him the test in a bracelet gift box to the theatre he was working at, with the instructions to facetime me when he was going to open it. Although he was initially disappointed not to find an apple watch in the box, he was eventually happy with the news.
It was my hardest pregnancy. I had a small bleed at 9 weeks, but were reassured by a private scan in Exeter. I was diagnosed with Gestational Diabetes at 10 weeks. Had high blood pressure. I was looking after Lili and Charlie. But the pregnancy progressed well. At 36 weeks I had a bad hypo. My blood sugars dropped dangerously low. No matter how many glucose tablets I ate, I couldn’t get them to stay above the safe line. By mid morning I was also concerned that my baby’s movements had reduced. The midwives at Exeter said they wanted to see me, but knew it was a long way for me to travel, so it was my decision. Ben and I decided to go to the hospital.
We were in the middle of March 2018. And of course that day had to be the day where snow closed the A30! At one point it looked like we might have to stay in the car overnight. But Ben took advantage of a passing snow plough and nipped in behind it. It still took us 2 and a half hours to do a journey that should have taken 45 minutes! Once at the hospital I was hooked up to a monitor and of course, baby started moving! I also managed to get my blood sugars to stabilise. The consultant came to talk to us and said that she was happy baby was fine, but she also took on board the fact that I said baby had reduced her movements and said that if we wanted they could induce me. I wasn’t ready for her to arrive, so we asked if we could think about it overnight. They kept me in hospital, to monitor me and baby.
We decided to go with the induction the following day. It just felt better to be safe and if the doctors were happy that she wouldn’t have to go to NICU then we trusted them.
24 hours later there was no sign of labour. Ben joked he couldn’t do another night of no sleep on a chair next to my bed and to go have a word with myself in the shower. I came out of the shower at 4.20pm. Daisy Jayne arrived at 5.06pm after what was a really rather fast and surprising labour! The midwife almost didn’t catch her as she arrived. She is a joy. The happiest, most chilled baby ever. She had her first birthday last Wednesday.
I still battle with the regret of not having held Henry, every single day. Having Charlie to watch grow up makes me wonder what Henry would have been like had he lived. In 2016 I did a skydive in his memory to raise money for Towards Tomorrow Together. As we floated under the canopy I spotted a circular rainbow. I pointed to it and told my instructor that it was a sign from Henry. He manoeuvred us to fly through the centre of the rainbow. After that day the regret was less. I feel more at peace than I did, like flying through the rainbow in the clouds was my way of holding my angel.