Stories,  Support

Elei’s Story – Awareness Week 2021

Our son Tyson was born a little overdue, we got there in the end, back and forth to Maternity but 3rd time a charm. After being given the okay we were left to go to the birth centre to recover.

But he wasn’t settling, ob’s every 2hrs, the morning nurse came in and next we were in NICU for 7 days.

Fast forward to 6 months old, Tyson was a dream, but we started having issues with his weight, they kept putting a Nasal Gastric tube in and out, back and forth to A&E, then we found he had chronic constipation, he was put on IV Clean Prep and we trialed every medication for constipation, still an issue to this day at 3.5yrs old. He was still having issues with his weight and the NG tube kept being put in and out, there were constant visits to A&E.

We found ourselves at one stage on the ward for 16wks. We were told it was behavioural, we did messy play. His team had refused a pH study, so we worked with the dietician and SLT, we tried formulas, you name it we did it. He was labelled Failure to Thrive and Food Aversion.  I thought I was losing my mind.  The constant screaming and arching his back. They saw me in tears, questioning my mentality, I was fine, I just needed help for him. All medical professions by then claiming its behavioural.

I was going to lay a complaint, I had an instinct, talking to our support people, as we have no family support, they told me to go to the Disability Commission and they appointed someone, the next day she came up to the ward and tables were turned. We had our team changed, Tyson had his 4th biopsy, and that it is when it was picked up, he has severe reflux, everyone except us as parents were gob smacked, immediately he started on triple treatment and everything else just fell into place.

All I can say is trust your instincts, you know your child best.

GRSNNZ are amazing, we can all relate, its non-judgmental, sometimes it’s nice to sit down, have a cuppa while it’s still hot and chat to other mums who are in your shoes.

Tyson has since had a younger brother, Lachlan, who was born with a Bilateral Cleft Palate and was NG fed since birth, another NICU baby, our last child of 7.  He was diagnosed with reflux at 6wks old, I would cry mixing Gaviscon at 2am, he was always crying. At 9mths old he had a complete Cleft repair, whisking his tube out early we were admitted to MotherCraft, baby number 7, really? He never knew how to feed though so what did I have to lose? I did it and we learnt something new.

Once he started becoming mobile we were able to phase out his reflux medication until recently, at 16mths old, he started waking choking and spluttering and the whole afternoon would turn to chaos because he wouldn’t resettle. We took him to our GP who checked him over, all checked out well, we put him back on his reflux meds and he is a changed boy.

You are their voice, you’ve got this, you are not alone, you will get through this.

I am now a solo mum of 7, 5 of which have disabilities.

If I can do it, you can too.

Someone once told me if week by week is too hard, take day by day, if day by day is too hard take hour by hour.

Reach out ask for help, I’ve learnt people genuinely care,

It’s okay, you/we got this xx

© Elei Levao and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand May 2021.

These stories are our members’ personal experiences and opinions, and they are part of their healing process. Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust shall not be responsible or in any way liable for the continued accuracy of any information given, or for any errors, omissions or inaccuracies in these personal stories whether arising from negligence or otherwise, or for any consequences arising there from. Views expressed do not necessarily represent the views of the managers, coordinators or committee.