In May 2019, our son Joshan passed away in his father’s arms, shortly after he was born. He was removed from the ventilator, after we were told by doctors that he would not make a recovery, following a delayed emergency c-section.
He was perfect with beautiful hair and a little button nose. After a smooth and healthy pregnancy, what should have been the most wonderful time for our family became our worst nightmare.
The world was carrying on around us and all I wanted it to do was stop so that I could process what had happened. Instead of planning our first family photoshoot, we were planning a funeral.
The postmortem results showed Joshan to be a healthy boy, he was simply perfect. However, he did have hypoxia, which means he was deprived of oxygen, but for how long, we don’t know. All I know is that I had all the signs and symptoms for placental abruption or another acute event, which were consistent with the extreme and constant pain in-between and during contractions, bleeding, and wide decelerations of Joshan's heart rate. The severity of these signs was not realised until the obstetric doctor found out my uterus had ruptured, after performing the emergency c-section.
The maternity unit maintained that nothing could have been done differently, and that not having fetal scalp electrodes available did not have any impact on our outcome, despite our concerns.
Three years later at the inquest for Joshan's death, an independent coroner confirmed that the lack of fetal scalp electrodes during labour more than minimally contributed to his death. We had to fight for this eventual admission and apology from the hospital.
Having experienced this, I now urge pregnant women who have these symptoms to voice their concerns immediately during labour and it’s why I support Sands’ work to provide more training to healthcare professionals to improve maternity care.
Ever since we lost Joshan, my husband, Vijay and I have been determined to create a legacy in his name by helping to make a difference in any way we can, so that other families don’t have to go through the heartbreak we have been through. If by sharing our story we can help to save the life of one baby, then it’s all worth it.
We believe that research to understand why babies die is so important for many reasons. Whilst it doesn’t take away the waves of grief that hit you, it does help to create much needed change in practice and culture so that more babies’ lives are saved.
As a couple of South Asian heritage, it’s very upsetting to still hear that babies from Asian or Black backgrounds are more likely to die than white babies. No baby should be more likely to die because of their ethnicity. This must change, and we hope that by sharing our experience, we can also play our part in helping to reduce those inequalities.
My initial involvement with Sands was in January 2022, when I reached out to the charity after I saw a message on Facebook asking for Asian and Black parents who had experienced baby loss to attend a focus group to support with research into improving end of life neonatal care.
I was proud to take part in memory of Joshan, and something I found incredibly rewarding and it’s why when I was invited to take part in Sands’ Listening Project this year, I didn’t hesitate because I feel so strongly about the power of parents’ voices.
This project gave me a space to come together with other parents to be listened to and heard so that our personal, yet shared experiences, can be used to help improve care and save lives.
My initial contact with Sands has led me on a path and connected me to Madhuri, one of Sands’ Bereavement Support Services Officers. There was an instant click when we met. She explained what she and Sands want to achieve in terms of baby loss within South Asian communities and I just knew I had to be a part of it, and to help make a difference in any way we could.
Even though we have been supporting Sands for almost two years now, we know this is just the start. We want to use our experience to help as many people as possible, whether that’s by supporting research to drive change, or by sharing our experience to encourage others to come forward and seek support.
I remember after losing Joshan how lonely it felt. We didn’t know where to turn. It wasn’t until four months later that I found my local Sands support group and decided to attend. At first, I didn’t know what to expect but I found it so comforting to be in a room with other bereaved parents who shared the same pain we did.
I want other people who have sadly experienced loss to know that they are not alone, that there is support available for them. I am proud to say that I am now a fully trained Befriender and I also support Madhuri with the monthly online support meetings for those from South Asian backgrounds.
Since we met Madhuri and came to Sands, my husband Vijay, has too found the confidence to speak about our loss from a father’s perspective, which is so important. He has featured on the Voices of Baby Loss podcast, shared his story on webinars and has even completed Snowdon by Night Trek in May raising over £4,000 for Sands.
I would like to say a huge thank you to Madhuri and Sands for giving us the opportunity for our voices to be heard and for us to be recognised as bereaved Asian parents. We are eternally grateful for this safe platform that Sands have created, and for as long as sharing our voice helps to make a difference, we’ll continue to speak up and support Sands.