'No parent should have to say goodbye to their child'
A bereaved Dad from Eastleigh is fronting a fundraising campaign for Rainbow Trust Children’s Charity, which provided vital support during his daughter Annie’s short life.
Mike Langfeld from Highbridge is bravely sharing his emotional story about Annie and the support he and his family received from Rainbow Trust after she was born with a rare life-threatening condition in October 2018.
His Rainbow Trust Family Support Worker, Liz, and Rainbow Trust volunteer, Annabel, provided vital emotional and practical support to his family, including his five-year-old son Zach, throughout Annie’s illness and following her tragic death in October 2020, a week after her second birthday.
To tie in with Father’s Day on Sunday 20 June, Mike is sharing his experiences to help Rainbow Trust raise much-needed funds after the charity’s income has been dramatically impacted by COVID-19.
Annie was born at 38 weeks after a difficult pregnancy, weighing just 4Ibs. She was immediately taken away for an emergency blood transfusion due to having an extremely low haemoglobin level. She was also intubated to help keep her alive.
Over the next few weeks it was confirmed that Annie had a rare mitochondrial syndrome called Pearson’s and Mike and his wife Becky were given the devasting news that there was only a 50% chance that Annie would reach the age of two.
“Whilst in Southampton neonatal unit we were referred to Rainbow Trust for support and were paired with our Family Support Worker Liz.
“Liz started giving sibling support to Zach, our older son, who was three at the time, through activities, trips to the park and a friendly face to just be there. She enabled Zach to have moments of fun and enjoyment, like any other little boy. This meant so much to my wife, Becky, and I as we were trying to juggle hospital life and home life and were both very torn.
“Thankfully, we were able to bring Annie home before Christmas 2018 so that we could try to make some memories whilst we were able. However, the medical regime Annie required was extremely intense and Becky and I both struggled to balance this with ensuring Zach had the attention he needed. Liz would continue to visit weekly and give Zach some one-to-one time and make a fuss of him.
“Just over a month after bringing Annie home we were back in hospital and the support Liz provided was a lifeline. She was there whenever we needed. Other than my mum and dad we did not have any other support. Suddenly we had someone else we could call upon to support Zach whilst I stayed in hospital each night and Becky spent day times with Annie.
“In summer 2019 we only had a few hospital stays and we were able to create some lovely family memories. However, the hospital stays became more frequent when the winter viruses kicked in and we were in the intensive care unit over Christmas and New Year.
“Liz continued to be a great support during this time. She also introduced us to Annabel, a Rainbow Trust volunteer. Annabel also became a trusted friend who was able to offer support to Zach and, even more critical, to Becky as well. She spent time by Becky and Annie’s sides in hospital. A hospital is a very lonely place when you are sitting there day in, day out on your own. To have a friendly person to visit and talk to is priceless.
“That relationship continued to develop and Annabel feels like a surrogate mum to Becky now.
“COVID hit the world in 2020 and lockdown meant we were shielding Annie at home. Both Liz and Annabel continued to offer vital support with running errands for us, picking up shopping and also giving Becky and me a friendly person to talk to from the door.
“Sadly, in September 2020, Annie was taken into hospital with a serious infection which Annie was not able to recover from. On 23 October, a week after her second birthday, she passed away in Becky’s arms, with her daddy looking over both of them.
“No parent should have to say goodbye to their child and I know my wife and I will never get over this. It breaks our hearts that our son Zach also has to cope with tragedy that no five-year-old should have to experience and live with for the rest of their life.
“If it wasn’t for Liz and Annabel we would not have been able to keep going. Both were with us after Annie’s death supporting all of us. They were by our sides at the funeral and Annabel gave a beautiful reading.
“I’ve been reflecting on the fact that Annie was in hospital for one third of her life. Over those two years, the support of Rainbow Trust helped us so much as we faced that intense loneliness and isolation that comes with long hospital stays.
“Both Liz and Annabel continue to support us through our grief.”
Rainbow Trust supports families who have a child with a life-threatening or terminal illness. When a child has a serious illness, family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with an expert Family Support Worker who enables them to make the most of time together, giving them practical and emotional support, whenever they need it, for as long as is needed. The COVID-19 pandemic has piled further unimaginable pressure onto these parents and children, and the charity’s Family Support Workers continue to provide a lifeline to them.
To support Rainbow Trust’s fundraising appeal and make a donation visit rainbowtrust.org.uk/donate