We 100% always wanted a family, that was always the plan – marriage, family, happy life – so we were so happy when I fell pregnant for the first time. But there were complications and so many problems with my body; my hair was falling out and I suffered severe swelling. I went from a size 8 to 16 in literally weeks. Looking back, everything pointed to lupus, but I didn’t know it then.
My first pregnancy was difficult
Our 12- and 20-week scans were fine, but I just felt something wasn’t right. I couldn’t really feel her moving much so I went to hospital at around 34 weeks. They found my waters were leaking and our baby was measuring at just 29 weeks. At 35 weeks, they induced me because my waters were so low, and, after an emergency c-section, Indya arrived, weighing just 4lbs. We were lucky that she survived.
It was a traumatic time. She was in an incubator for 2 weeks. I stayed with her, but I had to be referred for an x-ray because my legs were so swollen. I couldn’t walk, but they didn’t investigate it any further – the swelling went down, and that was that. They tested my placenta and found I’d had a placental abruption, but the cause of it was unknown.
We wanted to give Indya a sibling
2 years later, we decided to try for another baby, but I knew there was something wrong with my body. I felt fatigued and low all the time; I had headaches, brain fog, hair loss and depression, but the doctor kept telling me there was nothing wrong.
It was January 2017 when I found out I was pregnant again and I was overjoyed, but worried. One day at work about 9 weeks into my pregnancy, I started feeling some pains. I went to the toilet and there was blood so I went straight to A&E, who referred me to the EPU. A scan showed two sacs, but no heartbeat. It was just awful, so upsetting, but the EPU said it was just bad luck.
Another heartbreaking loss
It took a while to get over that loss but we started trying again the following year and fell pregnant. Again, I started bleeding around 9 weeks and miscarried in May. At that point, I felt there was definitely something wrong with me – but, again, the staff at the EPU said it was just bad luck.
That’s also when I found out about the 3 consecutive miscarriage rule. I’d have to lose another baby before they’d investigate. I can’t explain how that felt, to know I’d have to go through it all again before they’d test.
I argued, having lost twins I’d already lost 3 babies. I begged, but they wouldn’t help.
I asked for a referral to Tommy’s
That’s when I made contact with St Mary’s in London and begged them to see me, as the miscarriage clinic there is part of the Tommy’s National Centre for Miscarriage Research. Luckily, my GP was really understanding and referred me as soon as I asked.
I went in for tests in the June and everyone was absolutely amazing. It felt like someone was finally listening, was finally going to help. I felt hopeful because I knew Tommy’s would do everything in their power to find the cause of my losses and help us to have another baby.
The tests included hormones, ANA, blood tests and genetic testing on both me and Paresh, and they all came back negative. The only positive result was for antiphosopholipid antibodies, which are linked to lupus. Another test 12 weeks later came back positive, and that’s when I was finally diagnosed.
I felt more positive knowing Tommy's was there for us
Based on the results of the test, the team at the Tommy’s clinic came up with a plan for my care. I started on hydroxychloroquine and junior aspirin straight away. Then, as soon as I had a positive test in January 2019, I started on clexane injections and progesterone. I felt positive and hopeful knowing I had Tommy’s on my side.
I had scans every 2 weeks and, when we passed the 8-week mark, we started to let ourselves feel excited. We were full of joy at the 12-week scan, that’s when they told us our baby wasn’t well.
I went for a CVS test at Queen Charlotte’s and then had to wait two days for results. I felt sad, confused and numb. The test showed our baby had Down’s Syndrome and severe hydrops fetalis, and the doctors said she was likely to pass away at any point. We were devastated.
We made an impossible choice
I returned to Watford Hospital and they said I needed to take a tablet to end the pregnancy, but they couldn’t see me for 4 weeks. The idea of carrying her around, knowing she was going to die, felt inhumane – so, in the end, we went to a private clinic. I couldn’t face labour so they put me to sleep and did a C-section, it was horrible, waking up and not being pregnant anymore.
I went through a period of depression, which was grief really, and I wasn’t myself for a very long time. I felt so alone, like I couldn’t really talk about how I felt. We never talked about this pregnancy and I felt judged.
In my culture, miscarriage is a real taboo
In my Indian culture miscarriage just isn’t discussed, especially amongst the older generation. It’s appalling really, I had some horrible comments, like ‘it’s just a period, not a miscarriage’. I even had people asking me when I would give my daughter a sibling whilst I was miscarrying.
Since I shared my story, I’ve had so many Asian women telling me that they’ve gone through the same experience and wanted to talk about it, but felt like they couldn’t, and suffered silently.
Tommy’s referred me for counselling and talking about it, feeling able to open up, really helped.
We decided to try again one more time
After losing our daughter I was a mental wreck, in such a deep hole, and the only thing that kept me going was Indya. It was a couple of months before Paresh and I talked and decided to give it one final try.
Tommy’s had reassured us that our genetic tests had all been fine, that we’d just been horribly unlucky. They gave us the hope to try again.
I got pregnant in 2020 and it was amazing. We had no problems whatsoever, but we still didn’t tell anyone until after 20 weeks. I was anxious right until I held him in my arms.
Siyan Rai (nbow) Pindoria would not be here without Tommy’s which is why the charity means everything to us.
I'm running the London Landmarks Half Marathon to support Tommy's
After our rainbow baby arrived, I started to concentrate on my health, and running became my thing. That’s why I decided to do the London Landmarks Half Marathon this year for Tommy’s, in memory of my 4 angels. I’ve already raised over £4000 and it’s our way of saying thank you because they have done so much for us.
You can keep up with Bindhu’s fundraising on her JustGiving page.