Our daughter’s diagnosis wasn’t typical in many ways. She already had a paediatric specialist and she went through her diagnosis in 2020, at the same time as COVID-19. But as her MRKH diagnosis is now finalised and we have just marked the first anniversary of starting that journey, I have decided to write about how her first year has been for me as her mum.
Izzy’s MRKH journey began on 9 January 2020. I was in a meeting at work when I got a call from her specialist; she had been treated for precocious puberty when she was aged 9, so when her periods hadn’t started by the time she was 15, the team had begun monitoring this. Her doctor was calling me with her latest test results: what they could see on the MRI was a worryingly tiny uterus. They had already given her a hormone patch to stimulate its growth but now her doctor felt that it was unlikely to work – the likeliest outcome was that she would not have a functioning womb. We agreed that I would tell her and then we would all talk together.
I am grateful that we were able to tell her at home; I’ve heard so many stories since of girls being told in much more difficult ways. I was painfully aware of the effect of what I was about to say to her that evening but it felt also like something that I could control, that I could make it as kind as possible. I’d been shocked when I’d taken the phone call earlier that day but now, I put that aside to concentrate on how I could best do this. So I told her as we sat on the sofa, chatting about our day and she cried when she needed to while we cuddled her and she asked more questions when she needed to. We got out the ice-cream tub and watched her favourite TV show in between.
After about 2 weeks, things suddenly changed. I went into a type of denial and just kept saying to myself “this is going to be fine, absolutely fine”. Izzy spoke to her doctor who mentioned investigating for MRKH for the first time. Having a name helped us. I now had a new search term for my nights on the internet and I even started a spreadsheet of all the information and support that I could find. But Izzy also moved quickly from being quite numb to being overwhelmed by emotion. She began to struggle to concentrate, she was angry, she was sad, little things like not being able to get her shoe on crushed her. Finally, there was an awful day where she got locked out, walked back to school in the pouring rain, lost an Airpod and called my husband in tears. I realised that we needed to do something.
Luckily, my boss suggested that I take some parental leave. For the next few weeks, I took one or two days off each week. It helped that I was there, if only to make sure she had her key! But it was clear that Izzy couldn’t just continue as normal. We spoke to her school and agreed that she would attend as much as she could but all of her teachers were informed why she wasn’t attending fully. I’ve never been so proud of her as when she told her Head of Year “tell them what I have as I’m not going to be embarrassed; I’ve got nothing to be ashamed of”. We also began to look after her on those days when she just couldn’t get out of bed; it helped us to think about how we’d treat her if she had the flu. Her paediatric team had already suggested some psychological support and I chased that up. This was the right option for her as she is very good at talking about how she feels. Finally, all of my searching around MRKH also led us to the support groups and we were able to go to a meet-up and find girls of her age and mums like me. We began to feel less alone with it.
Day-to-day, it was hard, but we gradually made some progress. She had just completed her first full week at school since January when the country went into lockdown for COVID. This was a huge setback: instead of routine and normal life helping her come to terms with her diagnosis, she was suddenly stuck with nothing else to think about and it overwhelmed her again. There was lots of crying, screaming and shouting. It felt like the first time in her life that I didn’t know how best to help her. And that was scary and painful for me. I pushed my own feelings to the side. I felt too guilty to say the hurt I was experiencing, as I didn’t want to compare my sadness and grief to hers. I took to crying in the shower but what I really needed was someone outside of the three of us to talk to – and that’s not possible in lockdown. I’m sure I also felt some sort of guilt for her having MRKH too. I know that’s not true and many MRKH mums feel like that at first, but it’s a hard feeling to shake (and I haven’t quite got there yet).
More pieces of the MRKH puzzle fell into place as Izzy’s next round of tests showed that she has a horseshoe kidney and she was referred to an adolescent gynaecologist. By the end of 2020, her MRKH diagnosis was confirmed, she’s been discharged by her psychologist and it feels like a chapter is closing. There are still bad days (of course) but while the future is unknown and sometimes scary, I see her beginning to be excited by it too.
And how about me? Writing this is helping and I’m keen to do something more to help with MRKH awareness. But I also still need time to process my own feelings and to work out what my own challenges will be (I’ve already been with a group of friends as they discussed whose daughter will be pregnant first). But for the first time in a year, I think that it might really be “absolutely fine” and this time, not because I’m trying to deny that my daughter has MRKH.
Natalie, an MRKH mum