This is Robyn. She is our gorgeous, lovely 2 year old daughter from Macclesfield in Cheshire. She is a cheeky monkey but is a super strong fighter. Robyn suffered severe brain damage at birth and as a result now suffers from a list of medical conditions that dictate her daily life.
When I was 38 weeks pregnant with Robyn I’d felt her movements significantly reduce one day and by the early hours I hadn’t felt her so we went into the hospital to get monitored. Less than a couple of hours later Robyn was delivered by emergency cesarean section. She was very pale and had extremely low haemoglobin level. Haemoglobin carries the oxygen around the body, so we knew our baby was in a bad way. She was alive but very, very poorly. The doctors fought for hours giving her blood transfusion after blood transfusion and trying to figure out what had happened and what needed to be done to save our baby girl.
That afternoon I saw Robyn for the first time. She was in an incubator hooked up to machines with wires and tubes coming from all over her tiny body. Not quite how I’d pictured meeting my long awaited baby! But as soon as I spoke she started to try and move her eyes open. I knew from that moment what a fighter she was and how strong she was, and continues to be!
Soon after that brief moment she was transferred to a more specialised hospital 50 miles away, where they had the equipment and expertise to help Robyn. The days were a blur of worry and trauma, but with each hour Robyn grew stronger and seemed to fight a little harder.
We learnt that Robyn had suffered from a foetal maternal haemorrhage, which is where her blood leaked through the placenta into my own blood stream. This had caused hypoxic ischemic encephalopathy (HIE), which basically means lack of oxygen to the brain causing severe brain damage – grade 2.
When Robyn was a few days old she had an MRI scan which confirmed the brain damage, mostly to the area of motor function. And although the doctors couldn’t tell us how effected Robyn would be we knew she would have difficulty using her body and life would be a struggle.
Life is challenging for Robyn but she works so hard and is doing far more than anyone had dared hoped for! She has spastic quadriplegic cerebral palsy, dystonia, visual impairment, microcephally, silent reflux and is globally delayed. She also has mixed tone with her cerebral palsy so her trunk and head control is very floppy. Robyn’s spasticity is in all 4 limbs which makes it very difficult for her to control them, especially her arms and hands. As a result of this Robyn cannot sit unaided, roll, crawl or walk. She is also non verbal (although if you know our Robyn you know she can make a huge amount of noise!). She does weight bear on her legs though (with my support holding her floppy body up!) and standing is one of her favourite things to do!
Robyn is also super intelligent. Anyone who knows her can vouch that she does not miss a trick! She’s just a bit trapped in her broken body and this causes much frustration for her, and us of course!
She has to be supported at all times so needs specialised seating, and is getting very big and heavy to be carried around all day! The NHS have supplied us with basic equipment for Robyn which is amazing and she is making lots of progress but there are so many things that would benefit Robyn that are just so expensive.
We are fundraising for Just4Children to enable us to get some amazing equipment for Robyn which will hopefully benefit and improve her quality of life. We hope to fundraise over the next 3-5 years so as she grows and her needs change we might be in a better position to be able to get her what she needs, so we have set a target of £25,000. Right now our priorities for her are for a Mollii Suit, a P-pod chair – a supported comfy seating (less “strapped in” than her NHS chair) and a DMO Lycra suit which will help to support her trunk which would help her immensely with sitting. The suit is very tight fitting and Robyn will require a new one each time she has a growth spurt.
We’re not very good at asking for help, but we know what a huge difference these things will make to Robyn’s life and to make her more comfortable, but please know that every single penny we do manage to raise will be so gratefully received by not just us but by Robyn herself.
Thank you for taking the time to read Robyn’s story.