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Phillippa-Rae's quilt (Quilt Completed)
Illness: Kabuki Syndrome
Theme: Angels and Fairies
We want to say a huge thankyou to each and everyone of you, Pippa is absolutely over the moon with her beautiful quilt!!! It's absolutely gorgeous and means so much to us, thank you thank you thank you!! From the bottom of our hearts, you're all amazing
Quilted by: Mary
Stitched by: EE(Beth)Filmer (+)
Stitched by: Emily (+)
Stitched by: Helen (+)
Stitched by: Joanne Heap (+)
Stitched by: Julie Edgcumbe (+)
Stitched by: Karen Burton (+)
Stitched by: Michele (+)
Submitted: Feb 2019
Stitched by: Pippa (+)
Stitched by: Val Gilbert (+)
Stitched by: Karen Williams
Afer a very difficult pregnancy with lots of issues along the way Pippa was born very poorly indeed. She was lifeless and not breathing and was very difficult to ventilate. She was rushed of to the special care unit and thanks to the heroic efforts of the doctors they managed to stabilise her. Further tests showed that Pip was in renal failure and suffering from sepsis as it became apparent that there was no amniotic fluid present at birth. Pip's lungs were also failing as she had aspirated meconium (hence infection) and one lung had collapsed. She was rushed to Alder Hey Children's Hospital where they discovered that she also had a congenital heart defect called transposition of the great arteries. She needed immediate surgery as none of her organs were receiving oxygen because her blood was not being oxygenated due to the malformation of her arteries.
We spent two months in Alder Hey ICU and almost lost our girl countless times. She went on to have several further surgeries to get her fit for her major open heart surgery but sadly continued to decline. The surgeons and I agreed that despite her poor condition and the risks involved we should still try as without surgery she could not survive and I was prepared for the worst. At best I was told Pippa would have to go on a heart and lung machine and may never survive being taken of it. So off she went for her surgery which could take up to 8 hours but five hours later one of the Drs came out to talk me and announced with a huge smile of disbelief that not only was the surgery complete, Pippa was off bypass and stable. She did not require the heart and lung machine and she was now on minimal ventilation. Five days later, despite a stormy post-op period where she suffered seizures and issues with blood sugars, her chest was closed and in the following days she was taken of the ventilator and was breathing by herself with a little bit of oxygen. Ten days post-op we were home, Pippa was tube fed and on medication but doing amazingly well.
As Pip grew it became apparent that there were other issues and she underwent several more surgeries to help correct her vision and straighten her eyes. She has mobility problems and suffers a lot of pain and cannot walk very far or keep up with other children her age. She finds learning very difficult and has a very poor attention span. Walking, talking and all the usual milestones took a long time and a lot of hard work to master but Pip's determination knows no bounds and she battles through every hurdle with a huge smile on her face and personality impossible to ignore. At eight years old Pip was finally diagnosed with Kabuki Syndrome, a rare genetic disorder.
Pippa still battles daily with her disabilities and pain and finds lots of things difficult. She gets very tired as she is currently developing further health issues such as absence seizures which are under investigation, but she just gets on with it and meets each challenge with a big smile on her beautiful face. Pip has a unique ability to make everyone she meets smile and laugh with her infectious personality.