Looking back, I can see that I wrote our story for the RISA newsletter back in 2009 when Arabella was 18 weeks old, and again in 2012 when she was three years old. She’s now five years old, and I’m 99% sure that our journey is complete and behind us. So there is light at the end of the twisty reflux tunnel!

The very short version of Arabella’s five years includes GORD diagnosis at seven weeks of age after admission to hospital due to dehydration from feeding refusal, tube feeds starting at the same time and lasting for 2.5 years (not the 48 hours we were told it would be!), tube dependency resulting in complete aversion to foods and involving two years of feeding therapy clinics, three rounds of operations and numerous other tests, severe failure to thrive, multiple allergies and intolerances, and many other complications. Her treatment team over the years was made up of a GP, a Paediatrician, a Gastro Paed, an allergist, stomal nurses, a speechie, an occupational therapist, a child psychologist, and various other professionals.

After participating in a Graz-style aggressive tube wean a couple of years ago, we were able to stop feeding through the gastrostomy (stomach tube), though it wasn’t removed until October last year, when she finally got ‘on’ the weight chart at all. Ironically, the recovery from the tube removal surgery (she also had a severe upper lip tie dissected at the same time) was the worst of her procedures. But all she will have left is a small scar on her tummy, and a slight build (she’s not yet 15kg).

For a while there, we thought we would never get Belle off reflux medication, and after more than five years, I was getting a little concerned. But our most recent trial medication wean seems to have been a success, which is a big relief. She has just started on daily steroids for allergic issues, but that’s easy to manage and the future is looking very bright!

Her little brother Jordan (2 years old) was medicated for reflux for the first 13 months, but has completely outgrown any issues. He doesn’t really like to eat yet either, but as long as I stay away from him being weighed by professionals, we manage just fine, and it will no doubt come with time.

Arabella started school this year, and despite the concerns over the years about whether or not the sustained failure to thrive might affect her brain and development, she’s happy, healthy, active, and above-age in her learning abilities.

The things I took away from the journey are:

– trust your instincts, you know your child best

– nothing beats a support group like RISA, at times when even perhaps your partner/family are unable to offer the support you need

– remember that you’re the customer, even if you choose to use the public health system

– don’t be afraid to take charge of your child’s health and become their advocate (at times I asked for specific medical procedures, or for group meetings with all the health professionals together)

– there will be positives to balance the challenges of caring for a reflux baby/child, even if at the moment they feel very well hidden and difficult to comprehend (many of our ‘reflux babies’ seem to grow into empathetic, sensitive and bright children, and our bond with them can be very strong due to the sheer amount of care and attention they require/d!).

And finally, no matter how long the night seems, the day will come (in other words, this, like all things, will come to pass).

I’ve been volunteering with RISA for most of the five plus years (and plan to continue), and it’s very rewarding. I’ve made friends (both in person and ‘electronic friends’) and together we’ve supported each other through decisions (made with trepidation!) to expand our families, and have seen our kids grow and improve.

So on our final update, signing out!

Back to March ’14 Newsletter

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