I know I normally post about science and science adjacent topics, but in the interest of practicing what I preach and bringing my full authentic self, I wanted to post about a topic that I don’t think gets discussed. This is partly prompted by the time of year, but also by quite a few posts I’ve seen this week on twitter from people who have felt alone in similar scenarios. I also wanted to to give a view of how this feels 11 years on to those who are going through this now, to let them know that you will find a new normal. It will never be the same, it can’t be. It doesn’t however devalue what your life is worth, you will find a new way, one that is uniquely your own. This is all from my perspective: if your journey has been different I am in no way devaluing your experience, just sharing my own. Feel free to not read this post if you don’t want to hear me overshare.

So now the disclaimers are done, a little history which you may or may not wish to skip if you want to miss the details.

I’m 41 and 11 years ago, this weekend, my sister Claire died. She died when she was 5 1/2 months pregnant with my niece Morgan. Her pregnancy was normal, although there were concerns on the ultrasound from the start in terms of whether Morgan had an underlying condition that would mean the course of the pregnancy might not be successful. We were all super excited when she reached five months, as that had been the milestone beyond which we all thought a positive outcome more likely. Two weeks later my sister had a headache on a Friday night. I was away at a hen do for my best friend. She phoned my mum when she started vomiting. She called 111, who told her that it was likely to be a stomach bug and to remain hydrated. At 3 that morning she awoke partially paralysed. An ambulance was called. She seized on the way to the hospital and was brain dead when she arrived. This was confirmed 48 hours later when we turned off her ventilator and donated her organs. Morgan survived 24 hours and then also died. She was two weeks too early to be considered legally a person and for a C-section to be attempted. I got a call asking me to get from Leeds to the hospital in Cambridge at 7am, whilst horribly hungover, and in the way of these things the information handed over didn’t really cover the clinical picture. When I arrived and saw her chart (she was in surgery to see if anything could be done) I knew it was over. I was 30 and she was 32. She died of early onset pre-eclampsia and I was told they couldn’t rule out a genetic component and that I should consider not having children as we had a family history of difficult pregnancies. I’d been married 6 months.

So, I’m newly married. Children were the next thing on the cards. I was so so excited that I was going to be an auntie. In fact the first issue of the gift subscription to Mother and Baby magazine arrived at Claire’s the day she died and was there to greet me as I picked out her outfit to lay her out in. Suddenly, everywhere I go I’m faced with the question that every newly married woman gets…. are you having a baby? I get it from cab drivers, colleagues at work who don’t know what’s going on, from reps and other people who you see infrequently, and strangers who’ve you’ve never even met before. It’s a knife that gets stuck in your heart. Even now, all these years later, I dread these questions. “How many kids do you have?” None. Then the look as people decide where to go next: do they go for the super intrusive question or the platitude about the fact that you’ll enjoy them when you have them. It’s not like I don’t get it and, on a 1:1 basis, you shrug it off rather than scream back, because it’s not the individuals fault. It’s the fault of a society that bases my value on the Darwinian concept of my reproductive legacy. No one asks my husband these questions, at least not with the regularity with which I am. Certainly not strangers or cab drivers who notice his wedding ring. (NB when he read this he pointed out he does get asked, not so frequently, but it does happen).

I started my NIHR Doctoral Fellowship 4 weeks after my sisters death and, to be honest, I threw myself into it in order to see something concrete come out of the period. My sister had been planning on starting a PhD after she came back to work from maternity leave and I felt very much I was doing it for both of us. As people don’t talk about this stuff it was a hard time. There was no one who had been through a similar thing. Talking about not being able to have children makes people so uncomfortable as no one really knows what to say. My friends and I had all just got married and non of us had had kids, so I was the first one to face the issue. Although, now, I have a number of friends who for different reasons are in the same boat. In many ways, I wish the medical guidance had been ‘you can’t have children’. I found that you could try and have a termination as soon as there’s any rise in blood pressure or change in markers detected tortuous. The idea of walking into a hospital every week wondering if that was the week I’d have to abort was more than I could face. Even now it makes me feel sick. My husband and I agreed to keep talking about it. We have a wonderful and fulfilling life together. Although it is my body, for me it very much needed to be our decision. He has been a godsend throughout and always said that I was the most important thing in his world. He wasn’t prepared to risk me. Nevertheless, having the ‘will we won’t we’ decision hanging over our heads was an indescribable weight. Especially when our friends went on to get pregnant and raise wonderful children.

Close friends were great about the pregnancy piece. I had some friends who were too scared to speak about it too much as they knew how much it hurt. I had other people in my world who just threw baby pictures in my face without even thinking about it. The best ones knew how incredibly happy I was for them, even if some days I couldn’t face the detail. These friends checked in with whether I wanted to see that picture or hear that story so depending on how resilient I was feeling so I could still be part of their story. These ones would also message Jon before they phoned to tell me their great news so that I could have a glass of something treaty and get myself into the right headspace. I know it’s so tricky for people that I both want to be there and can’t fully always engage and, therefore, the rules change day by day. My plea is: if you aren’t in this particular boat, that you ask the question about whether I’d like to see/know/hold and not just assume consent. As time goes by, you’d probably never know that when you share without asking it hurts me. But it still does some days none the less.

So here we are 11 years on. One day, a couple of years ago, my husband and I spontaneously turned to each, with no preparation and said almost simultaneously ‘that ship has sailed’. We cried and, in all honestly, we drank champagne to celebrate. It was only in that moment that I realised the weight of ‘do i risk my life for this?’ and ‘am I a bad person for not wanting it at whatever the cost?’ and ‘am I letting my husband down by not just trying?’ I realised that he had been carrying exactly the same weight. It took a long long time to get here. I’d be lying if I said that there were not still some days, like the ones coming over the weekend, where it isn’t hard. Partly it’s hard because I can’t separate the grief for the children I never had from the grief over the sister I did.

I’m doing pretty great these days. We are the adopted aunt and uncle of a few of our friends children and we delight in spoiling them. On the 18th of August every year which was Morgan’,s due to date we send ‘Morgans gifts’ to children in our social circle in her honour and remembrance. Just because we can’t spoil her doesn’t mean we can’t spoil others in her name.

Here are some thoughts that might help if you are on the outside looking in (these are not all issues I feel in my setting but they are ones over the last 11 years I’ve come across):

• Please understand that my life has meaning even if I don’t have kids. Please, therefore, don’t devalue my plans and life by always expecting me to be the one to work late/cover the weekend because everyone else has children. You don’t mean the way it comes across or the way it sometimes makes me feel. I know that. I also know you need to be there for your family, and that’s completely right, but I have family too.
• Please consider altering slightly those questions you ask strangers who have life paths they may not be willing to share.
• Take a couple of seconds to think about consent before you give me your baby to hold. Neither of us want me to flinch and drop your precious parcel and sometimes my physical reaction is to back away before my brain kicks in.
• If you have a friend on IVF, please don’t ask if they are pregnant yet (this also goes for PhD students and their thesis being finished).

For the people who are still experiencing the panic attacks, the society doesn’t value my life depression, the what will my legacy be thought cycle. Know this. Your value does not depend on whether you can produce a child. Your value does not depend on what reproductive legacy you leave. Your value lies in who you are and whether you can have a child is nothing to do with it. Know also that it will get better. That the knives in the heart of well-meaning questions start to hurt a little less. You will find a new normal, you will form a new version of you of which this is a part, but not the dominant self-defining part. Know, also, that if you ever want to talk it through over tea and cake I am here for you.

All opinions in this blog are my own