REAL LIFE “Our rainbow twins were born at 28 weeks and have CP”
"It was such an isolating feeling..."
By Rebecca, Jayden and Jaxson’s mum
Jayden and Jaxson are quite literally our miracle, rainbow babies.
I had a pretty stress-free pregnancy apart from a heavy bleed at 13 weeks.
But at 28+3 weeks the boys were born and, weighing in at just 1.3kg and 1.2kg, both spent spent 8½ weeks in NICU [Neonatal Intensive Care] and SCN [Special Care Nursery].
When they were four weeks old, I should’ve been 32 weeks pregnant, Shane and I were called into the NICU for a meeting with the doctors.
“There is a high chance, both your boys will have cerebral palsy (CP), though we won’t know for sure until they’re a bit older.”
I cried. Then we both fell silent. It was such an isolating feeling. None of our friends or family had kids with disabilities. No-one we knew understood what we were going through.
Skin-to-skin was crucial for premmies Jaxson and Jayden.
“Will they be able to walk…?
Just after their second birthday I took the boys to a paediatrician appointment. Even though I knew we were getting a diagnosis of CP, absolutely nothing prepares you for it. It doesn’t matter if you know that’s what’s about to happen. Something inside of you still holds onto hope.
I don’t think either Shane or myself quite understood just how busy and different life would be. In one year alone, we attended more than 300 appointments between the boys!
Then the unanswerable questions were: Will they walk? Will they talk? Will they live a ‘normal’ life?
I have since decided that I don’t like the word ‘normal’, because what is normal?
“I know my children…”
One the CP diagnoses were confirmed, appointments started in earnest.
Physiotherapy, occupational therapy, speech therapy, physical rehabiliatation, dietitian… Meetings with numerous different specialists including paediatricians, neurologists, respiratory doctors, gastroenterologists, orthopaedics…
The majority of these people listen to our concerns, take them on board and help us find a solution.
But some made me feel as though my feelings aren’t valid. I don’t have a medical degree therefore I can’t have any idea what I’m talking about. When in actual fact, I know my children. I know when to be concerned or when something is working or not.
In the beginning, I did it all on my own. I attended all the boys’ appointments by myself while Shane worked.
If Jayden had an appointment, Jaxson was dragged along and vice versa. The older they got, the harder it became and my mental health was also going downhill.
As hard as it is at times, Rebecca and Shane make sure the kids enjoy their lives as much as possible.
“Jayden has so much trauma around hospitals….”
In 2019, Jayden had his first seizure and was later diagnosed with epilepsy.
His seizures were managed for a while but then they started to change and become more frequent. I was no stranger to seizures. I had seen them before but when your own child has one, it’s completely different. I couldn’t hold it together. I was an absolute mess.
After the first couple of seizures, Jaxson would sit there with me and comfort Jayden, while we waited for the ambulance to arrive.
Jayden now has so much trauma around hospitals, which often results in him screaming the place downe both just end up crying.
While everyone else is out there celebrating their five-year-old child writing their own name, we’re celebrating Jaxson holding a pen properly or Jayden holding a fork with food on it and bringing it to his mouth.
We’re celebrating being seizure-free; Jayden eating food orally; Jaxson taking more steps in his walker or drawing a circle.
In one year, the boys attended 300 medical appointments.
“Sometimes I have to walk away…”
The boys show amazing determination. They try over and over again but eventually get frustrated and burst into tears…
It’s so heartbreaking and on the really bad days, I have to walk away and have a moment.
Just before their fifth birthday, Jaxson said “Will I be able to walk when I am five, Mum?”
It has absolutely taken its toll on Shane and me, however it has also made us a lot stronger. We both struggle with things in our own way.
Shane doesn’t talk about it and I rarely do. I have really good days and then I have really shitty days where all I want to do is cry. But I just get up, put on a smile and push my way through the day, waiting for bedtime.
Some days I wish the boys didn’t have cerebral palsy but I would never change them. They have taught us and many people around us so much. They continue to teach us everyday.
Supertee was a life-changer for Rebecca, Shane and the twins as the medical garment allows any tubes and equipment to be connected without the need to get undressed.
I came across Supertee on Facebook and instantly fell in love with the design and the fact it’s a medical garment disguised as a superhero outfit.
It certainly gives Jayden and Jaxson a boost of confidence. The design of the top is perfect for when they are hooked up to all the wires and cords. So much easier to put on and take off again.
It also means that we no longer need to lift Jaydens top up, exposing his belly, to feed him through his PEG, we can now run it through the side.
Jaxson has had one surgery and has another in the near future, this Supertee top has been an absolute game changer! It’s way more than just a top!
I really hope that when other children put this top on they feel extra courageous; that they feel like a superhero who can conquer anything and fight.
