Xavier’s Story – Awareness Week 2022

I am mum of 3 boys who all had reflux as babies. Strangely my third boy had a much milder version. All three “outgrew” reflux as they were more upright. Or so I thought.

One morning when Xavier was 6 he was agitated and pacing in the lounge saying he “didn’t feel right”. His dad got him a bowl and he immediately vomited a significant amount of blood. Being an ex-nurse I collected the blood in a Tupperware container and put him in the car and headed to Angelsea clinic. After triage and showing them the amount of blood (over 200 ml) we were sent straight to Waikato Hospital. Little man was now smiling and chatting and the Dr said if she hadn’t seen the blood herself she would never have believed me (that’s exactly why I took it).

We were discharged to GP care. Xavier stopped eating as much as he had previously and became very “cuddly”. He never complained. He slowly started eliminating certain foods from his diet refusing to eat them and started dropping weight. Our GP referred us to Waikids and we were booked for a barium swallow which was inconclusive.

After that he dropped 3kg in one week (over 10% of his weight) we were booked for pH probe and biopsy. Results were positive for reflux with scarring right up his throat. He now weighed 18kg – down from 26kg. We were booked for a Nissen Fundoplication. We thought it would be the end of all of our issues. It wasn’t. It’s rare to have a failure in neurologically normal kids (I have heard this sooo many times now) but we are a “failure”.

I don’t know exactly when the symptoms returned as Xavier has a high pain threshold. But I do know, as a parent, I knew things weren’t right, and I said that to the Surgeon at our 6-month check-up. It was nothing I could put my finger on specifically but he was again very cuddly and there were appetite changes.

A few months later he said his “heart hurt” and he was “feeling pale”. He loved school, sports and his friends but he started coming home from school having been in sick bay, not having been well enough to play soccer and going in from playing with his friends. He would look horribly unwell to the point where we were ready to take him to hospital one minute and an hour later he would be playing soccer.

The surgeon repeated the barium swallow. Negative. The pH probe was repeated – also negative. I felt like I was losing my mind as I knew he was very unwell but there was no evidence to support this. Then he started vomiting and I finally had some proof. We were sent to Starship for oesophageal manometry. The letter from them was awful. It reported that there was nothing major to see and recommended GP care, no further surgical intervention warranted and something along the lines of “mother overreacting!”

 Xavier was now grazing on crackers all day and not eating anything particularly nutritious. He was hardly at school and as a result I was hardly working. He was weak to the point of passing out. I insisted they take him into surgery or admit him to hospital as I was not prepared to care for such an unwell child at home.

Begrudgingly he was booked for surgery. This surgery was twice as long as the first surgery and I was in tears fearing the worst. His surgeon came to see me in HDU that night and apologised to me. The wrap had failed and the fundus was adhered to his liver. The stitches hadn’t come undone – the stitch line had pulled apart. Xavier was very unwell post-surgery and it took 8 days to get released from hospital. He went home with an NG tube in place – for feeding and venting. We were under no illusions that we were lucky that a repair was possible. We knew we had to be very careful to give the stomach the best chance to heal. We stayed on fluids for 4 weeks, soft diet 4 weeks after that and then very restricted full diet for 4 weeks. We had check up every 4 weeks.

At 4 months’ post-op symptoms were back. I don’t know what the stats are on two failures but here we are. His symptoms got progressively worse. The wrap failed again. We are now 10 months post his second Nissen and working collaboratively to try and figure a way to support Xavier as the surgical team are hesitant to go in again after the last surgery. They are consulting with other hospitals to look at options.

It’s exhausting, challenging and I am grateful to have “found” Gastric Reflux Support Network as we navigate this challenging stage as I’m pretty fragile right now. It’s good to read others stories and know we are all in this together.

It’s exhausting, challenging and I am grateful to have “found” Gastric Reflux Support Network as we navigate this challenging stage as I’m pretty fragile right now. It’s good to read others stories and know we are all in this together.

© Linsey Box and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand May 2022.

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.