After a difficult first pregnancy and the birth of her daughter Indya, Bindhu shares how she experienced baby loss multiple times, losing twins, followed by a miscarriage. With support from a miscarriage clinic that’s part of Tommy’s National Centre for Miscarriage Research Bindhu fell pregnant again but devastatingly, had to have a Termination for medical reasons (TFMR) when her baby was diagnosed with Downs Syndrome and severe hydrops fetalis and Bindhu was told she was likely to pass away at any point. Bindhu and her husband Paresh decided to have one final try and in 2020 Bindhu had a straightforward pregnancy although she was anxious right until she held her son Siyan Rai (nbow) Pindoria in her arms. 

Please be aware that Bindhu has chosen to share pictures of her son, Siyan Rai (nbow) Pindoria with her story.

"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 (autoimmune) 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 my daughter 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 two 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 then 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. 

Two 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 nine 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 Early Pregnancy Unit (EPU). A scan showed two sacs but no heartbeat. It was just awful, so upsetting but the EPU said it was just bad luck. 

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 nine 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 three 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 was really sad and I argued, having lost twins I’d already lost three babies. I begged but they wouldn’t help. 

I saw a poster at the EPU and took down Tommy’s helpline. That’s when I contacted a hospital 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 and was finally going to help. I felt hopeful because I knew the miscarriage clinic would do everything in their power to find the cause of my losses and help us to have another baby. 

The tests I had included hormones, ANA, blood tests and genetic testing on both me and my husband Paresh, and they all came back negative. The only positive result was for antiphospholipid antibodies which are linked to lupus. Another test 12 weeks later came back positive, and that’s when I was finally diagnosed. 

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 specialist support on my side. 

I had scans every two weeks and, when we passed the eight week mark, we started to let ourselves feel excited. We were full of joy at the 12 week scan, but then our joy came shattering down as that’s when they told us our baby wasn’t well. We both turned numb. I cannot describe the feeling of pain that went through my heart. The sadness and questioning in ‘why me’ and ‘what have I done to deserve this’. My husband who hardly cries broke down to the floor. It was a devastating time for us. 

I went for a CVS test at hospital 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 and we made an impossible choice. I returned to hospital and they said I needed to take a tablet to end the pregnancy, but they couldn’t see me for four to eight weeks. The idea of carrying my baby girl around, knowing she was going to die, felt inhumane. I called other hospitals to see if they would able to book me in sooner, but everyone was full for another eight weeks, so, in the end, we went to a private clinic through work. 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. 

The most challenging aspect was walking around at work or being with family and friends, knowing that my baby girl could pass away at any moment, yet no one was aware of what I was experiencing as no one knew about this pregnancy. 

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 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. This is the reason we decided to keep our last pregnancy to ourselves; we were worried that if it didn't go well, we would face judgment. Even now, we feel relieved that we chose not to share it with anyone at that time. 

Tommy’s referred me for counselling and talking about what had happened and feeling able to open up really helped. The miscarriage clinic clarified that I had no other medical concerns and they examined my husband's genetics, and everything came back clear. That gave us the hope to try again. 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. 

I got pregnant in 2020, and it was amazing. We had no problems whatsoever, but we still didn’t tell anyone until I was after 20 weeks. 

I was anxious right until I held my son in my arms, and Siyan Rai (nbow) Pindoria, would not be here without Tommy’s miscarriage clinic and their research. Any charity that helps families with baby loss is important to us. 

Since that time I’ve collaborated closely with Tommy's on their various campaigns. One campaign that I felt particularly passionate about was the effort to change the law regarding the three consecutive miscarriage rule. I had the opportunity to attend the Houses of Parliament alongside MP Olivia Blake, where I shared my baby loss story with all the MPs. The law was signed by our King three years ago and I am proud to be a part of this.