Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

This Wasn’t Part of the Plan

This Wasn’t Part of the Plan

Thursday 8th March 2018; life as I knew it had changed forever when those two pink lines appeared on the pregnancy test I was holding.

In those initial moments thoughts flooded my mind. I dreamt of everything this little bean that was growing inside of me would do. I imagined Christmases and birthdays, holidays and happy times.

The excitement and anticipation were overwhelming.

I was almost nine weeks pregnant when I found out. You see, having Polycystic Ovary Syndrome meant that my chances of ever conceiving a child were diminished.

We’d tried years before but without success. In the end, we gave up, believing that it wasn’t meant to be. I had very irregular periods but when Aunt Flo decided to visit, she floored me.

I’d be in agony for days, so I made the decision to go back on the pill. Late in 2016, we agreed that I would come off the pill again, you know, just to see what would happen.

I was 29 years old so time was running out. I lowered my expectations and believed deep down I’d never be a mum.

Then it happened. I got what I’d always wanted; my first positive pregnancy test.

The months passed. We made all the necessary preparations for our impending arrival. I did all of my research on breastfeeding as it was how I was planning to feed my baby.

My due date came and went, I had membrane sweeps that proved fruitless.

I was a week overdue when his movements slowed down to the point I was so concerned that I felt I had no choice but to call my local maternity unit.

They told me to go in. I waited just under an hour to be seen then the CTG machine was placed on my bump.

Nothing but silence.

“I’ll have to get a doctor to scan you,” the midwife said. My heart was racing so fast I expected it to come flying out of my mouth.

The doctor wheeled in the scanner and explained she needed to check the baby. I looked at the screen and there he was.

Still.

He wasn’t moving and panic washed over me. Within minutes, with a sense of urgency, I’ve never experienced before I was rushed to theatre for an emergency caesarean section.

I was still in my clothes as I was put to sleep and when I was brought round again I was informed by the consultant that it had taken 26 minutes to resuscitate my baby boy as he had been born with no heartbeat.

Nothing could’ve prepared me for what was to come.

Jaxon was transferred to another hospital for a procedure called total body cooling which reduces the temperature down to 33.5 degrees, preventing further brain damage.

It’s a relatively new treatment that’s been around for about ten years. I realised how bleak his situation looked when the doctors told us that they may lose him on the way.

Yet he survived.

I had to wait four days to hold him and when I did he was covered in tubes and wires.

He’d been having seizures and his organs were failing. He couldn’t maintain his blood pressure and had numerous blood transfusions.

We had more end-of-life conversations during his first week on Earth than I’d care to think about and doctors didn’t expect him to survive being extubated.

We signed forms to say not to resuscitate him as we didn’t want him to suffer any longer if his little body simply could not sustain life.

We were told that he would likely be no more than a vegetable if he did survive and he would probably never come home.

Jaxon proved everybody wrong though and showed his determination to live every single day.

After 31 days in the NICU, Jaxon did come home. Immediately the terms Hypoxic-Ischemic Encephalopathy and global brain damage became a regular part of my vocabulary and our future as a family suddenly looked very different.

The past five months have been the most difficult of my life. I’ve learned skills I never imagined I would need.

My days consist of appointments, therapy, tube feeds, suctioning, research, as well as all of the regular baby stuff.

But actually, I’m one of the lucky ones because I miss nothing. Jaxon is far from being in any kind of vegetative state. Every single thing he achieves I notice and I celebrate.

This might not be how I imagined life to be and Jaxon might not be the neurotypical baby that I expected he would be when I first saw those two pink lines, he might be delayed and missing milestones but he’s doing things at his own pace and slowly but surely, I’m learning to not only accept that but embrace it.

Jaxon’s future, at this stage, is so uncertain.

What I do know though is that he’s a warrior. He’s so determined. His resilience is admirable.

He’s already doing things doctors told us he never would, he amazes me each and every day and I know that no matter what, my love for him will see us through every single challenge we face in the future.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Louise Cheetham

Meet Our Blogger

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my feet I became a voluntary peer support worker supporting others with mental health issues. Then Jaxon arrived and my life changed forever.

View Emma Louise’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 4 months on

Purchases on £99+

UK Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of £99+:

No Interest if paid in full in 4 months on purchases of £99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

Purchases of £98.99 or less:

Buy now and pay over time with PayPal Credit when you spend £98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...