Madison P's quilt (Quilt Coming Soon)
|Illness:|| Hypoplastic left heart syndrome
Theme: Fairies/flowers roses
Quilt will open soon, keep checking back!
Fairies/flowers roses - Predominantly pink please
Madison loves crafting such as painting, glitter, and colouring.
She likes to play with her dolls
She loves to tidy up after her siblings
She likes ballet
Madison's condition was diagnosed
antenatally so a plan was made for her birth and her surgeries following. She would need 3 stages of open heart surgery to help create a circulation system and give her a chance at life. At birth she was put on medicine to stop her duct in her heart closing as this would kill her, until she could have surgery. She had a scan of her heart and lungs to confirm diagnosis and then after a bed came up at Great Ormond Street she was transferred to the cardiac ward. Surgery was booked for the following Monday when she was 7 days old. This surgery is called the Norwood procedure and is very risky and lots of complications can arise.
Madison did well and only had a few complications. She spent two weeks on intensive care before being moved back onto the ward. Madison then had a rough ride and needed to go down to theatre twice more after this. She got very poorly and it was decided it was time for her second stage of open heart surgery called the Glenn procesure and she also needed a full repair on her aorta to give her a chance. Again she had a rough ride but made it through.
After 20 weeks in hospital we finally got to bring Madison home. Due to complications Madison relied on a feeding tube so two weeks later we went back to Great Ormond Street and had a gastronomy preformed to insert a feeding tube directly into her stomach to feed her. This helped with her reflux and helped us avoid unnecessary hospital trips to have a tube re inserted in her nose.
Madison had physio every other week and daily at home as well as other therapies to help her develop. Because of her heart condition she gets tired very quickly so spent a lot of time napping in between.
At two she started nursery. She didn’t particularly enjoy this and was off quite a lot with colds and ear infections. We then found she needed grommets to help clear the infection. So she had surgery at Great Ormond Street to insert these and remove her adenoids.
Madison also has absence seizures. She has had these since birth. She has them in clusters which then causes her to be tired afterwards.
She also has autism which means she struggles in social situations with groups of people. She doesn’t like eating very much and struggles to communicate with new people or those that don’t understand her.
In September 2019 she started at a special needs school and she has come on in leaps and bounds. Her confidence is brilliant. She tries hard to communicate using her voice or PECS symbols. She enjoys playing in the kitchen or with dolls. Her favourite activity is crafts, the messier the better!
Madison has had a hard winter this year with her health deteriorating as her heart gets tired.
We have just had the date through for her final scheduled open heart surgery called the Fontan procedure. This is a complicated surgery and needs a long recovery but we are confident this will give Madison some much needed energy and help her to keep up with her peers for longer.