Eternally grateful: 20 years on
We recall the sounds, sights, and smells as if they happened yesterday. Almost 20 years ago, we embarked on the incredibly emotional journey that is the NICU. No one could have prepared us for this experience, and the term 'NICU warrior' applies not only to Kai but also to us as his parents. Looking back, we often wonder how we managed to get through it all.
Against the odds
At 26 weeks, Kai was the size of a baby born at just 21 weeks due to severe intrauterine growth restriction (IUGR). After numerous scans and an amniocentesis, conditions such as Down's syndrome, Edwards’ syndrome, and achondroplasia were ruled out, but Kai remained extremely small for his gestational age. The day we heard the words, ‘Baby needs to come out now’ was one we will never forget – 16 September 2005. Less than two hours later, I was at Jessop Hospital in Sheffield for two shots of steroids, more scans and tests . Thanks to the exceptional care of our consultant, our little miracle, Kai, arrived via C-section just six days later, weighing only 450 grams (just under 1lb) with only a 10% chance of survival, he was the smallest surviving baby in that hospital.
His eyes were fused shut, his tiny head was the size of a small kiwi, and his feet resembled the size of those little cola bottle sweets. His skin was so translucent, his skull softly formed, and when laid on his side, his little ears were stuck to his head. I will always cherish the memory of him attempting to open his eyes at just seven weeks old, and finally holding him for the first time at eight weeks, as he had been too unwell for cuddles beforehand.
146 days later…
Despite the challenges, we never let negative thoughts overwhelm us. Kai was (and still is) our little fighter, often keeping the NICU staff on their toes with his numerous health struggles. While he endured countless blood transfusions, fluctuated between CPAP and ventilation, battled chronic lung disease, faced feeding issues, infections, and brain bleeds, he never stopped fighting. He truly is our little miracle and 146 days later, on Valentine’s Day 2006, we were finally able to bring him home .
Nothing could have prepared us for this experience, and life seemed to operate on autopilot, with everything revolving around our tiny human fighting for his life.
“His presence lights up any room, and everyone who meets him describes him as a breath of fresh air. He is full of positivity, possesses the kindest heart, and has the sweetest soul.”
Challenging times
Kai has faced various challenges regarding his vision. He has stage 3 retinopathy of
prematurity (ROP), but thanks to a remarkable consultant who performed extensive laser
treatment at just three months old, his sight was saved. He also deals with bilateral nystagmus, bilateral high myopia, photophobia, a lazy eye, and has been registered with a cerebral visual impairment (CVI).
In his early years, we noticed developmental delays, followed by a diagnosis of autism at age six.
Kai is a true inspiration and has persevered through mainstream school with all the necessary
support, and my background in early childhood education has significantly aided this.
His presence lights up any room, and everyone who meets him describes him as a breath of
fresh air. He is full of positivity, possesses the kindest heart, and has the sweetest soul.
Carving his own path
While life will continue to present challenges, we are preparing him to face them. If I could offer one piece of advice, it would be this: as much as you may want to protect your premature child from the heartache of their early birth by wrapping them in cotton wool, try not to. Instead, give them the confidence, belief, and no-nonsense support they need to embrace the world and carve their own path
Kai's passion is music. From the moment he wakes up until he goes to bed, he is immersed in it. He is about to start his fourth year at college, working towards his Level 3 in Music Performance and Production, where his tutors wholeheartedly support him. As long as he is happy and healthy, that is all that matters to us. We have a saying in our home: "Smile, shine, and take it one day at a time."
Thanks to Cat for sharing Kai’s story.