I have recently met with Rebecca and Chas Knight, a couple from Port Sunlight. They talked to me about their daughter, Pip, who they sadly lost just before Christmas to Patau Syndrome (also known as Trisomy 13) – one of a number of the lesser known syndromes that affects families every year.
There is no cure for Patau, nor will there ever be, and it only affects a tiny percentage of babies – it occurs in about one in 16,000 newborns. Due to the presence of several life-threatening medical problems, many infants with Trisomy 13 die within their first days or weeks of life. Only 5% to 10% of children with this condition live past their first year, and sadly Pip was one of the children that had this.
The Knights only discovered this when they attended their 20-week scan. Sadly they received news that no parent would ever want to hear. The staff at Arrowe Park did everything they could to comfort them, but sadly there wasn’t a dedicated quiet room for them to come to be in.
While the scan of your unborn child can be a momentous occasion for many families, it’s important to remember that there are medical reasons behind the scan also, and unfortunately sometimes this can be news of the worst kind.
It’s really important that we have well trained staff and good facilities to help people in the early stages of this kind of shock and distress.
That’s why the Knights are holding a Day for Pip, on June 20 between 11.30am and 5pm at the Lyceum in Port Sunlight to raise money to furnish a bereavement room at Arrowe Park Hospital.
That’s so parents who receive this kind of news have a quiet room where they can try to understand, and to train a bereavement midwife for these kind of circumstances as sadly there isn’t one yet in the Women and Children’s ward.
There is a page on Facebook with more details and I’ll be there.
I hope you can join us.
Written by Alison McGovern MP for Wirral News