Our families reflux journey started in 2003 when my eldest was born, she was 6 weeks early due to pre-eclampsia and weighed just over 4 pounds. Things ran smoothly for a while and I remember reading an article on reflux in Little Treasures magazine and thinking thank god my daughter hasn’t got that; little did I know. First a little bit of background, my partner was a dairy farmer and we were in the coldest, most awful house when miss was born. Having a reflux baby and an awful house definitely put a strain on our relationship. To be fair the first year with her is a bit of a blur, nights spent rocking her in the lounge; doctors and hospital appointments which really didn’t help and me left thinking I was a neurotic first time mum who couldn’t cope. I breastfeed for a little while but ended up formula feeding as she was so inconsistent and I needed to know how much she was getting, but she always gained well. She was medicated but it did very little. Our saving grace was when she ended up sleeping though the night at 4 months, but she never slept much during the day. Those first few months with her were very difficult for a first time mum. Starting solids and walking were the milestone that helped her most.
But the teenage years brought back her reflux and after my sister found out about the gene mutation MTFHR, we got my daughter tested and sure enough she was a carrier also*. It is still an ongoing battle for her but we manage her condition with the support of a naturopath.
My miss middle was born in 2007, we waited so long because of the tough time we had with our first and I didn’t want a repeat. Luckily her reflux wasn’t as bad, nothing like my eldest or youngest. She was a spiller and under medical advice I put her on medication and thickened formula which helped but she still stained the paint with her vomit. She was a breeze compared to my first and so we were lulled into having an another.
2009 my youngest was born 5 weeks early a little over 4 pounds, I was so anxious she would have reflux. I knew pretty much in the first 2 weeks that she had it, by then I knew what was what with reflux. This reflux was a torture like no other.
I have vivid memories with my youngest, we were still dairy farming so were somewhat isolated. I did have a supportive good friend out where we lived and an awesome doctor, but we moved after 3 months to another farm then again a month or so later to another very damp house.
So we started miss on medication, but it didn’t really help. she was not gaining weight as she should, she was deemed failure to thrive but we struggled to get into the Paediatrician. At 5 months she was admitted to hospital for 5 days due to low gains and my tiredness. The one thing that sticks in my mind about this time was the amazing nurses I dealt with and how supportive they were.
It was then I decided after nearly 6 months to stop breast feeding, I was gutted, I really wanted to carry on, I felt like a failure this time as I knew she was my last bubba. She was put on Neocate and had a PH test for her reflux, we were finally getting somewhere. I swear I carried her in a front back everywhere apart from the shower, that’s how unsettled she was, I barely slept and swear I am still catching up on sleep now (that’s my excuse and I am sticking to it lol)
At 13 months she was only 6.81 kg so she was a tiny wee thing, and then she started having breath holding spells. She had been in and out of hospital due to these, ear infections and bronchiolitis. This was a bad year for her and my miss middle; we were back and forth to the hospital with different issues partly due to being in an awfully damp house.
We were advised that reflux surgery was a good option for her, which was great news but scary at the same time. I was living on not a lot of sleep; I’m still amazed at the cool TV shows that are on in the early hours of the morning! She would sleep on me propped up.
Those 18 months were the worst, with 3 kids tag teaming each other with illnesses. There was little sleep and I did not like asking for help, so I struggled on.
At 18 months we drove up to Christchurch for the long awaited surgery, Ronald McDonald house was fantastic. Watching her go in to surgery was hard, and my partner was the one with her when she woke up thank god because she had a breath holding spell when she came around, I would not have coped well with that.
Apart from that it had gone well, but then the poor poppet got Rotavirus so she had to be isolated, and of course she couldn’t vomit; it was awful. We got put up at a motel as we had to move from Ronald McDonald house, they were fantastic. We were there a bit longer than first expected but she came right and in a few days we got to go home.
The following year we moved to Australia and although she was still a tiny wee thing she was getting better, we ended up seeing an endocrinologist in Australia and had a fantastic Paediatrician and doctor, she was still little but they advised us she was fine.
She is now a happy healthy 11-year-old, who has had no more reflux problems, not to say that it won’t return, as 3 out of 5 of our family suffer from GORD.
A lot of my girl’s issues I feel have been due to MTHFR, which makes so much sense now. Doctors don`t really know too much about this which can be frustrating.
I was so grateful to find the support of GRSNNZ was there when I needed it. It was always good to know that I wasn’t the only one going through it and if I had any questions or doubts they were always there to help as much as they could. My girls are now 11,12 and 17 but the reflux memories will never ever fade as it was the most challenging years of my life, but so worth it.
*Note: MTHFR stands for Methylene-TetraHydroFolate Reductase. It is an enzyme that converts folate you eat into the active form (5-Methyltetrahydrofolate). The MTHFR enzyme affects this at the last step. So if you have a mutation in the gene then it’s going to be affecting how much active folate you have available. Source: https://mthfrsupport.com.au/what-is-mthfr/
© Ruth and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust May 2020.