A Day for Pip
Beschermde donatie
Our beautiful daughter Pip was diagnosed with Patau Syndrome during our routine 20 week scan. Following further tests and discussion with our consultant, we were told that sadly she would not be ‘viable for life’. As such, we made the heart breaking decision to end the pregnancy at 22 weeks.
On the 19th of December, and after 16 hours of labour, Pip was born sleeping. We had a precious couple of hours with our daughter which we will always cherish and be grateful for before we finally said our goodbyes.
Patau Syndrome (also known as Trisomy 13) is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with Trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (Microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (Hypotonia). Due to the presence of several life-threatening medical problems few babies make full term. Those who are born die within their first days or weeks of life. Only five to ten per cent of children with the condition live past their first year.
We will be holding a fundraising event on Saturday 20th June 2015 to raise awareness of Patau Syndrome and raise money for the maternity unit in Arrowe Park Hospital. We are also hoping to use the money raised to create a space that parents can go to after receiving devastating news from a routine scan. It is at this point that our journey began and having this would have made a difference to us, however small it may have been. We aim to get the room named after Pip.
We can’t change what happened to Pip but we can make sure that everyone knows who she was, how loved she is, and how she touched so many lives in the short time that she was with us.
On the 19th of December, and after 16 hours of labour, Pip was born sleeping. We had a precious couple of hours with our daughter which we will always cherish and be grateful for before we finally said our goodbyes.
Patau Syndrome (also known as Trisomy 13) is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with Trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (Microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (Hypotonia). Due to the presence of several life-threatening medical problems few babies make full term. Those who are born die within their first days or weeks of life. Only five to ten per cent of children with the condition live past their first year.
We will be holding a fundraising event on Saturday 20th June 2015 to raise awareness of Patau Syndrome and raise money for the maternity unit in Arrowe Park Hospital. We are also hoping to use the money raised to create a space that parents can go to after receiving devastating news from a routine scan. It is at this point that our journey began and having this would have made a difference to us, however small it may have been. We aim to get the room named after Pip.
We can’t change what happened to Pip but we can make sure that everyone knows who she was, how loved she is, and how she touched so many lives in the short time that she was with us.
Organisator
Rebecca Knight
Organisator