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York couple back hospital baby bereavement suite

A charity appeal to create a baby bereavement suite at York Hospital is getting close to reaching its £250,000 target despite being threatened by the disruption of Covid-19.

The Butterfly Appeal kicked off with a generous donation of £94,672 from the York branch of the stillbirth and neonatal charity, Sands. The appeal has received huge support from the local community and hospital staff but fundraising ground to a halt with the arrival of the pandemic.

Rachel Brook, Fundraising Manager for York Teaching Hospital Charity who launched the Butterfly Appeal, explained: “We became disheartened when Covid-19 hit and we went into lockdown as the events we and our fundraisers had planned to raise money to complete the appeal had to be cancelled. While we have been overwhelmed by support for the immediate needs of the pandemic, we still have £12,000 to raise to finish our appeal.”

York couple Emma and Martyn Johnson are backing the appeal after their baby daughter Faith was born sleeping in 2017. Martyn pledged to run 159 miles in a series of events to mark the number of days that Faith was with them to raise money. He raised a total of £2,677 which has gone to the Butterfly Appeal.

Emma said: “When someone dies, you are told to think of the good times and hold onto the memories of them. When a baby dies, you have very few memories to hold onto and as the years pass you constantly think of the ‘what ifs’, the Christmases, the birthdays and the milestones they should be meeting if they survived. Instead of leaving with their newborn in a car seat, bereaved parents leave the maternity unit with a memory box full of keepsakes.

“A bereavement suite gives parents the gift of time with their baby and a meaningful opportunity to say a long goodbye and make special memories during a heart breaking experience. We were so thankful of the three days we were given to spend with Faith while I was recovering.

“Those first few days following a baby’s stillbirth are so important to get right. We had the opportunity to have Faith’s hand and footprints taken, which we have on display at home and I have on a necklace. We had photographs taken of her, read her stories, dressed her and held her whenever we wanted to.

“Our friends and family were able to meet her in a safe, comfortable, quiet place away from the main part of the unit where you can hear babies cry and see families excitedly meeting healthy new arrivals. Partners can also stay in the room overnight so they are able to support each other together and begin to make plans for their baby’s funeral.

“Baby loss is a taboo subject and often people don’t know how to talk to bereaved parents in fear of upsetting them or through a lack of awareness about how people are affected. The keepsakes can often start a conversation about their baby and help parents to share their memories of them in those first hours and days with others in the future.”

While Emma and Martyn were on the unit, they heard about the Butterfly Appeal. Knowing how important the bereavement suite had been to them, they wanted something positive to come out of Faith’s short life and to help other parents that will sadly go through the loss of a baby.

Emma continued: “Fathers can often feel helpless and be overlooked but Martyn decided to fundraise in Faith’s memory and to thank the support the hospital had given us. His decision to run 159 over a number of events was surprising because, whilst having played football at school, he is not a natural runner, and certainly not a distance runner. At that time the furthest he had run was 10km.

“Martyn decided to try and mix up the distances, from 10km up to half marathons at a number of local events, half marathons and the Great North Run. By the end of the challenge Martyn had run five 10k challenges, five 10 mile events and six half marathons. By running to raise awareness, and money, Martyn had the opportunity to channel some of his grief into something positive. Training runs were also an opportunity for Martyn to have time on his own to process his thoughts and there were also occasions where his training runs would also include a branch off to spend time with Faith at the cemetery. Whilst the number of miles he is running now has reduced, it is something that he still keeps up as it is a link to Faith and still allows him to think and process his feelings.

“Our eldest daughter Phoebe, who was three and half at the time also participated in a 1.5k run at the Knavesmire. We welcomed our rainbow baby Rosie a year ago, who was born at 24 weeks gestation, due to similar complications experienced in Faith’s pregnancy. She is doing well due to the amazing care she was given but we want her to grow up knowing all about her big sister Faith. We miss her everyday and although Faith isn’t living at home with us, we still parent her in our own way, include her in our family life and the keepsakes we made in the bereavement suite allows us to tell her two sisters all about her.

“Please support the Butterfly Appeal if you can because sadly it is likely that you may know someone who will need this hospital resource in the future - it is more than just a room.”

Rachel added: “Every week at York Hospital a family will learn that their baby is unlikely to survive birth. We know there is nothing that can take away the pain for these families following a late pregnancy loss, stillbirth or death of their baby soon after birth, but we also know how precious those few hours or days can be before they have to say their final goodbyes.”

Beverley Shelley, Bereavement Midwife, said: “The loss of a baby at any gestation is devastating for parents and their families. Good bereavement care at the start of a parent’s grief journey can have an impact on their long-term mental wellbeing. The creation of a purposely designed bereavement room is an essential part of this. It helps to create a sanctuary for parents away from the busy workings of a delivery ward. 

“The new bereavement unit will provide more much needed space, be soundproofed, have new furnishings and equipment and have access to its own garden. This will promote a quiet, welcoming area for parents to spend quality time with their baby creating memories that need to last a lifetime”.

Kim Milner from York Sands, said: “The death of a baby during pregnancy, at birth, or after birth is a major bereavement. It is invaluable to have this room to spend the time with your baby, bathing them and taking photos in a safe environment. These are the memories you take away with you and it’s vital you feel safe in the room.  The care that parents receive around this time has a huge impact on their long-term wellbeing and we are delighted to be able to support the Butterfly Appeal.”

Anyone who would like to help by raising funds can call York Teaching Hospital Charity on 01904 724521 or donate at 

YTHC - Emma and Martyn 

Butterfly appeal image of unit 1

Butterfly appeal image of unit 2

14 August 2020

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