I was 23 weeks pregnant when doctors offered me an abortion.
‘We’re sorry,’ I was told. ‘But we don’t know if your baby will survive being born, let alone afterwards.’
So shocked, I wanted to scream. Medics believed our unborn son was suffering from anencephaly – a rare neural brain tube defect.
‘It’s a condition where the baby is missing parts of their brain and skull,’ they explained to my husband Brandon and me.
It was a nightmare we never imagined we would find ourselves in.
We met back in March 2010 at a church in Florida.
It was love at first sight and by the following September we were engaged.
We married eight months later and, in time, started trying for a baby.
I’d always wanted just one. A boy, I imagined. And when I discovered I was pregnant in January last year, Brandon, 30, and I were thrilled.
Devastatingly, that joy was short-lived.
After my 17-week scan – where we discovered we were indeed having a son – my doctor called.
‘We saw something on your baby’s images that we are concerned about,’ he said. ‘We are going to refer you for more specialist tests.’
I felt sick to my stomach.
I was 23 weeks pregnant when doctors offered me an abortion
‘We just have to wait and have faith,’ Brandon said. He was right but it didn’t make the worrying any less.
The tests revealed what doctors thought was anencephaly. That’s when I was offered an abortion.
‘Is my baby suffering in my womb?’ I asked.
‘No he is not,’ I was told.
‘Will he suffer as he grows?’ I asked. Again, the answer was ‘no’. That was all we needed to hear. An abortion wasn’t an option for us.
We had to give our child a chance – if he wasn’t in any pain in the womb then we couldn’t terminate his life.
It wasn’t our call.
I continued the pregnancy, praying every day that he would be okay and survive.
Jaxon came into this world on August 27, 2014, weighing just 1.8 kilos.
Seeing him, I was shocked.
He had the tiniest head I’d ever seen and was whisked away immediately to be stabilised and have a feeding tube inserted into his nose.
It was a bittersweet moment. We were so happy to meet our baby boy and so in love with him already, but we were scared because his head was so abnormal.
But our son was a fighter.
He cried when he was born which gave us extra hope and we clung to it.
But the next day, doctors didn’t sugarcoat the situation.
‘We don’t know if he will walk, talk, speak, hear, understand, tell you if he’s hungry,’ they said. ‘He might never be able to communicate – we need you to be prepared that he might die at any time.’
In other words, if he lived he would probably be in a vegetative state. Yet even though we were warned to expect the worst, we had to hold onto hope.
It was all we could do.
Each minute we passed with our son was treasured in case it was our last.
But Jaxon held his own. Incredibly, after almost four weeks in hospital he was discharged.
By then doctors realised there was more to Jaxon’s diagnosis. They didn’t know how to care for his needs.
All they knew was that there was no cure and he needed to be home, comfortable with his family, until the inevitable came when he would pass away.
We’ve been called selfish for allowing him to be born at all
It was a stressful time and back home, although Jaxon was sleeping and eating, Brandon and I were on high alert.
When our boy began having seizures earlier this year, we did our own research.
We took Jaxon to Boston Children’s Hospital, the nation’s top paediatric neurology facility.
He was eventually diagnosed with microhydranencephaly.
It means that Jaxon’s brain stem, which is crucial for nerve control, is thinner than it should be. His cerebellum, which controls coordination and balance, didn’t form properly and his brain is mostly made of fluid, not tissue.
It was a devastating diagnosis but at least we knew what we were up against. The prognosis may sound bleak, but Jaxon is an incredible little boy.
He’s just turned one and he can communicate – saying ‘dadda’ and ‘momma’.
He engages and looks you in the eye when you speak to him and he can smile. He gets excited when he sees new things or people he recognises.
Every day he gets stronger, his eye control is better and his hearing is great. None of this logically makes sense but as his specialist says, Jaxon is the rarest of the rare.
Of course we have had negative comments, usually from people posting on our Facebook page where we share Jaxon’s day to day growth and achievements.
People have criticised us for not aborting him when we had the chance and we’ve been called selfish for allowing him to be born at all.
I truly try not to let these ignorant people bother me – they don’t know us!
This is our very personal journey and every decision we make for Jaxon has his best interests at heart.
I look at him and I know that we made the right decision in keeping him.
While I don’t know how long we have left, every day is a bonus and we’ll make the best of it.
Jaxon’s family is fundraising for his care and to raise money for other brain disorder charities. If you would like to help, visit www.gofundme.com/eld1og
Originally published in that's life! 29 October 2015