The Leeds Teaching Hospitals NHS Trust

Toby bear helps families learn about condition affecting premature babies

12 July 2016

The Trust’s neonatal team had a visit from a very special guest recently – Toby Bear, the mascot of a new initiative to improve support across the country for the families of neonatal babies with the condition NEC (Necrotising Enterocolitis).

Toby Bear is the brainchild of Susan Spencer, who named him after her premature little boy Tobias after he sadly died from NEC at a hospital in London despite the best efforts of staff to save him. 

Susan decided to channel her sadness into doing something positive, so set up a support group for families affected by the condition. In the early days of coping with her loss, Susan came up with the idea of a bear to help children who have survived NEC understand more about the condition and this gradually turned into making Toby Bear as realistic as possible with some of the features that youngsters may be left with as a result of NEC, such as scarring and sometimes the use of a stoma bag.

On her visit to Leeds, Susan met up with Lead Nurse for Neonatal Services, Anne Harrop, and other members of the team, to introduce Toby Bear and explain how he can help families. Susan now hopes Toby will be working with families up and down the country, and she has also written a small book about the bear and the condition, covering his premature birth and surgical journey.

For bereaved parents there are also plans for ‘bags of love’ containing a tiny Toby Bear, a heart shaped candle and a keepsake.

Anne said: “It was wonderful to welcome Susan to the Neonates and to hear about her work promoting Toby Bear. Despite the tragedy of child-loss, it is inspiring to see her turn her experiences into something positive.

“I am sure we will be doing lots to promote the Toby Bear scheme among families who have been affected by NEC, and I look forward to hearing more about how it develops.”

Toby Bear Copy