December 11 2013 Latest news:
Kay Atwal, Chief Reporter
Monday, October 21, 2013
As a recent survey reveals a lack of awareness about children’s hospices, a mother talks about how Richard House helped her when she needed it most.
Shevon St Marthe knew when she was five months pregnant that her unborn child may have problems once she was born.
Doctors were concerned that she was too small and thought she might have Down’s syndrome.
But when Lemaia was born in March 2012 it was clear she did not have Down’s but another chromosomal abnormality, called trisomy 18, also known as Edwards syndrome. Just as children with Down’s syndrome can range from mildly to severely affected, the same is true for children with trisomy 18. Lemaia was very severely affected. Doctors told Shevon to prepare herself for Lemaia not surviving the night.
Although she survived the night she had serious problems with her heart and kidneys, breathing difficulties and physical deformities such as rocker bottom feet, a small jaw and head, low-set ears and overlapping fingers. After a fortnight at the Homerton Hospital, Lemaia transferred to Richard House Children’s Hospice.
Shevon, who lives in Newham, said: “I didn’t even know children’s hospices existed before then. But Richard House has really helped me and my son Rashawne.”
The plan was that Lemaia would stay at the hospice for three to four weeks, to give Shevon time to learn how to feed her and manage her care; Shevon and Rashawne, eight, stayed in one the family flats during this time.
Shevon said: “It was like I was at home. The care she got was excellent and they took on my son and treated him so well.”
Despite the care, Shevon never got to take Lemaia home as she died at Richard House but this wasn’t the end of Shevon’s and Rashawne’s relationship with the hospice. Both attend bereavement counselling and Shevon has been actively fundraising for the hospice ever since Lemaia’s death.