Date published: 01 September 2020 by Amber Hemming

For a family waiting for a life changing transplant the levels of anxiety are always high. Will the transplant come in time? Will the surgery and recovery go well? What will life be like afterwards? Add a pandemic and lockdown into the mix, where usual rules don’t apply, and the stress is immeasurable.

Hospitalised for months before lockdown due to deteriorating health, then having visitors limited to one parent at any time, meant that I had to adapt my support for one family with a seriously ill child - meeting them outside the hospital for socially distanced walks a few times a week to offer what comfort and care I could.

As is often the case when you are waiting for something, it comes when you least expect it. After a busy day delivering essential supplies to other families I support, I received a call to say that a kidney had become available for the child of this family and it was hoped that the transplant would happen overnight.

I was unsure what support I would be able to give, but my instinct to be nearby kicked in. Even if I could not be physically with them, being nearby would mean that I could respond if they needed anything. As it was, the family were given a private room to wait in and I was able to sit with them through the night while tests were done, preparations were made and the agonising wait to hear that the transplant would happen began.

It was the most humbling of experiences, during the small hours, as we talked about the things that had led to this point, the memories we had shared over the four years that I have known them and the incredible gift that a bereaved family had given at the most unimaginable time of their life.

In my experience, when a family invites you into their lives and welcomes the support you are offering, a level of trust grows, and a unique relationship can develop. That night was a pivotal moment.

As the night turned to morning, the news came that the transplant would happen. We waited together until it was time to go to theatre. As we left the hospital - them to try and rest during the long operation and me to return home - they thanked me for being there. I told them it had been a privilege to be there with them.

Rainbow Trust Family Support Workers provide bespoke, emotional support to the parents, siblings and family of a child who has a life-threatening illness, at times when they need it most. To make a referral, or find out more, please visit our support pages.