My Story

Hi Everyone! I'm Sophia; and heres abit about me...! It’s gunna be a long read!
I’m Sophia and i’m 3 years old, although I dont look it size wise!
I was born at 31 weeks exactly after a bumpy ride from 24 weeks; my Mum started to notice her symptoms of pre-eclampsia one night when at work, and it snowballed from there!
I was too small to monitor because i was before 26 weeks and didn’t fit the criteria but Mum was offered a scan, which showed I was okay, but not moving as much as I should have been.
Mum was given steroids for my lungs and we stayed on labour ward for 3/4 days before the decision was made we had to transfer; to somewhere that had a cot for me in a level 3 NICU and a bed for Mum... the nearest? Sheffield!
Mum nipped home to tell my big brothers and sisters but by then our beds had gone; our option was Burnley... better travel wise!
Mum deteriorated overnight with a sky high blood pressure, but eventually got transferred by blue light ambulance about 4am.
We arrived in Burnley and met Mr Maher; who was to become our lead consultant specialising in our issues!
We spent 6 weeks going to and from Burney twice a week for outpatient appointments on a Tuesday and Friday, fitting in the very beginning and ends of his regular clinics; at least weekly we had to stay for 2/3 nights...because Mum’s BP was almost always borderline dangerous for us both.
I used to get scanned on a weekly basis to check the blood flow I was getting one week and my size the following week and we alternated this; I hardly ever grew but a few grams was good enough to meet the criteria.
November 10th 2017; My Birthday!
Mum went for her early morning appointment and I hadn’t grown in 2 weeks and my blood flow was going the wrong way from Mum.
Plug pulled; I’m out of here, Mr Maher said I’m arriving.... today!
Mum got lots of drugs that made her feel terrible and on fire, and Dad came to join us when he finished work.
15.59pm I’ve arrived; 2lb 2oz; 960g ... flat; they worked on me for 7 minutes ‘til I took my first breath.
Then i was whisked away to NICU, I was a very strong little girl who went straight onto CPAP oxygen; my progress was slow, I got off CPAP and onto high flow oxygen; I couldnt tolerate milk and had to be fed through a central line into my umbilical vein.
Day 7; poorly, pale, not moving as much - Sepsis! Very bad Sepsis... Strong IV antibiotics and a step backwards to CPAP oxygen 😢
Day 10; starting to perk up; stepped down my oxygen again but still not managing my milk; the doctors are queerying NEC
Day 14; my tummy has improved, and i’m now tolerating very small amounts of milk.
Day 18; transfer day! I’m going closer to home! Airedale have a bed with my name on; and i’m off my oxygen!
I came home on 21st December 2017!
3lb 15oz! Still tiny!
All my first year I just spent growing, trying to out on weight and do all the normal things, my first appointment at 1 year old; No 2018, Mum raised concerns abiut my left sided preference, my right hand was always clammed up like a shell.
June 2019, MRI scan at Leeds of my head.
November 2019, my MRI scan shows bilateral periventricular leukomalacia; both sides of my body are affected, but my right side definatley more so.
They think I must have had some episode after birth as my head scan was fine on day 2, but they will never know exactly when it happened.
Appointments in 2021; lots of them, physio and orthotics work together to get me splint or shoes that work.
July; we visit posture and mobility clinic; they recommend botox to loosen my hamstring muscle so i can get my right foot flat on the floor
January 2021; botox at Leeds has worked a treat; i’ve gone from being able to walk with my walker and drag my bad leg to walking without my walker!

Theres a very long (short) version of me; so far!
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please support me on my toddle and sponsor me because without Leeds I wouldn't be able to walk independently!

if you want to see more of me follow my facebook page - Sophia's Journey