After a perfect pregnancy and an eventful labour, he was born blue, floppy and lifeless with apgar scores of 2, 2 and 7.
As part of Cerebral Palsy Awareness Month, today’s post is from Emmy Heaton.
Mum to AJ who has Cerebral Palsy.
He needed a lot of help and resuscitation, and with that he took his first gasp at 6 and a half minutes old, and then another one at 9 minutes.
He was then intubated and whisked off to NICU to be cooled as part of the TOBY trial. Cooling is where the babies core temperature is lowered to 33 degrees (induced hypothermia) for 72 hours after birth.
This was to help slow down and hopefully stop any further swelling/damage to his brain.
When AJ was born he were diagnosed with severe hypoxic-ischemic encephalopathy HIE, grade 3 and he had bleeds on his brain.
Whilst in NICU me and my partner were told to expect the worst, and at the very best we should expect our precious boy to be severely disabled.
We were given ‘the talk’, the talk which no parent should have to sit through.
Did we want them to stop helping him with his breathing?
Of course we didn’t want them to stop, why were they even asking us this?
He was our baby, we didn’t care about how much care he would need, we just wanted him to survive.
It was like a huge kick in the gut, and if it wasn’t for the help and support I got from the NICU nurses, my partner and family, I don’t think I would’ve got through it like I did.
Aj has had a lot of struggles in his life, countless tests, Physio appointments, OT assessments, EEG’s, MRI’s, blood tests, sensory assessments, hearing tests and Botox.
Sometimes I think we should live in the hospital!
But he has undergone all of these tests and appointments with grace and he still manages to come out with a big beautiful smile at the end of it all.
While he was a baby, I feel I was quite ignorant to the fact he had extra needs, it was our normal (I had no other children). He missed a lot of milestones, yet I was still in denial.
“He will catch up, he has to”.
I think I also put aside my own feelings more than I should’ve. I pushed people away and lost quite a few friends. I just didn’t have the time for people anymore!
Aj was 11 months old when he was ‘officially’ diagnosed. They said he has significant delays and that he has cerebral palsy. Spastic quadriplegic cerebral palsy.
I wasn’t shocked, I knew it was coming, but I didn’t expect it to hurt like it did. I felt like we were back in NICU, because that’s where we’d last heard that term.
Eventually I felt comfortable enough to tell people his diagnosis, I tried to avoid telling people face to face, as I hated to sympathetic head tilt, and the “Aww but he’s so cute though”.
I didn’t want people to pity us.
It’s getting easier to tell people, and easier to discuss his difficulties with others. But I still struggle when I think about his future.
I worry whether he’ll be happy, whether we can do enough for him and sometimes I worry I do too much for him.
I worry he won’t have friends and one of my biggest fears is bullying or what will happen when I’m not around to protect him?
In September Aj should hopefully be starting at a special needs school. I am SO excited for him to go, I’m really hoping he’ll blossom whilst he’s there, they have a huge sensory room which I know he will love!
The thing I would most like to tell people, is to find joy in each day.
Whether it’s something huge or just a little something to smile about.
I’ll admit, I struggle to find things to smile about some days but it does help when everything’s not all doom and gloom.
Our lives are still pretty busy, we have around 4-8 appointments every week, sometimes even more!
The list of diagnosis seems to be growing again, he is currently under investigation for epilepsy and autism.
They should include on that list that he has an infectious smile and his awesomely, cheeky personality. The difference now is I make sure I talk about it, whether it’s to the doctor, my partner or my mum.
I make sure someone knows how I feel about it all. And that helps a LOT! My sunshine keeps shining bright throughout all this, he keeps me going.