- Monday, December 11, 2023
By: Vikas Jain
AT A ROUTINE scan, we found out that Aum was going to be very poorly. They spoke the words, “I’m really sorry, this is not good news”.
That moment is forever etched in my innermost parts. Aum had a condition called Fetal Akinesia Syndrome, a life-limiting, rare genetic disorder. We made a difficult decision to continue our pregnancy, not that there is any right or wrong, but we wanted to meet him, even if it was for five minutes.
In January 2016, Aum was born with a C-section with the loudest cry. We didn’t get to hold Aum; we were just shown his face and he was taken straight to intensive care.
We wanted to create memories with Aum and our two girls (aged five and three at the time), so we transferred him to Acorns Children’s Hospice in Birmingham. We held him, his sisters played with him, family came to meet him and a photographer took some photos of us spending quality time as a family. From the receptionist and kitchen staff to the nurses, all at Acorns were brilliant.
After two days, Aum’s breathing became very shallow. We held him close. It was so calm, we said, “it’s ok son, if you need to go, go”. Aum passed away in our arms. He was at peace. After he died, we made the decision to donate Aum’s heart valves which I’m so pleased to say were transplanted into two other babies. My wife became a human milk donor and donated to a hospital in desperate need for breast milk. Aum’s charity has raised £10,000 for Acorns Hospice since.
The months that followed were the most difficult of our lives. We were supported by a baby loss charity Sands. They listened, empathised and propped us up in our darkest times. They gave us so much hope.
A proud moment was putting on Sands United Solihull shirt, embroidered with Aum’s name. Sands United Solihull is a group of bereaved dads, meeting weekly, supporting each other’s grief through sport. Dads really do get a raw deal and are often the forgotten parent. Dads often return to work first compared to the mother following their loss and our employers need education on baby loss and the tragedy of it.
So, I am championing bereavement support for dads. On Father’s Day, I recorded a video which is on the Sands website – there are some very important points in there that need to be heard and shared. Bereaved dads need to share their grief just as much as the mothers to help them with their mental state.
I would like to reach out to more members of the south Asian community. Being a member of the community, I have been through this journey and the stereotypes that exist are unreal.
However, it is not just one-sided. I feel that health care professionals need to do more to engage with the south Asian community. To understand more of our culture so that they can make them aware of groups that exist like Sands United for bereaved dads and the local Sands support groups for parents.
If you’re a friend or family member of a dad who has lost their baby, be there. Don’t fill in the uncomfortable silences, just be there for them.
