Mabel’s Story – Awareness Week 2022

We have been on the reflux journey with our little Mabel for many months now and she’s just getting worse as the days go on despite multiple daily medications, Omeprazole, Domperidone and Famotidine. 

We have seen multiple doctors and paediatricians to try and help Mabel and to be honest nothing we have tried really helps. We have been diagnosed with severe silent reflux. It’s truly awful to see your precious wee one in so much pain every day. You miss out on the magical moments, you don’t get to see her beautiful personality shine through because of the chronic pain. 

We have tried many alternative therapies, treatments and everything suggested by support groups and fellow reflux sufferers, colic calm, slippery elm, gripe water, elevating the bed, colic / reflux hold, starting solids, Infacol, Pamol, Ibuprofen, feed thickeners, Gaviscon, osteo treatments the list is endless. The only thing that I can say helps ease her pain during an episode would be gripe water. Something so simple. She loves it and it takes her mind off the refluxing for a minute, often the only thing that really helps is a shower with daddy to completely distract her but in the heat of the moment during an episode you just have to ride it out together, hold her tight and tell her it will all be ok and we love her. There’s not much else we can do once we have given her max doses of all her medications. It’s a very helpless feeling. We often can’t decide whether we need to take her to the hospital or manage it at home. We are constantly living on the edge, we have a bag always packed ready to go to hospital if needed. 

It’s heart-breaking, exhausting and very testing. 

We hold Mabel most of the day, pacing the house, up and down the hallway. We can’t put her down, and we have tried all the expensive contraptions to make our life easier like rockers and bouncers but she is only happy on mumma or daddy and that’s just fine. 

We have learnt to live with silent reflux. 

It’s just part of life now. 

Most days are challenging and there’s many tears from Mabel and Mama, but there is so much love and if anything I think it has made our family stronger. 

I am so grateful for the support through the Gastric Reflux Support Network, Jenny has been beyond amazing especially when we were admitted to hospital for a week when Mabel refused her feeds for four days. She started losing weight and became dehydrated. 

I was at breaking point, I reached out to Jenny and have never looked back. What an absolutely wonderful organisation. 

Mabel is now exclusively tube fed. She went from the 2nd percentile to the 25th so tube feeding although not improving her reflux is helping her thrive. 

We have been told that she will grow out of it by 5 months. That’s the most common advice. She’s six months old tomorrow and I can’t see her growing out of this any time soon unfortunately. 

We have a great community support network including a paediatric nurse, speech language therapist and a dietician to help us weekly with feeding etc. 

If there’s anything I could recommend for families on this reflux journey it would be to stay strong and utilise all the support you can. I’m not one to generally ask for help & support but I am open to everything now. To be the best mama for your baby you need to be strong & look after your well-being. Say yes to offers of help, a home cooked meal or a hug. De-brief at the end of the day with your family, have a cry, eat something. Look after yourself. 

Advocate for your little one x 

If there’s anything I could recommend for families on this reflux journey it would be to stay strong and utilise all the support you can.

© Inger Kite 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.