Today we are chatting to Mum Sarah Stacker about infant reflux. Sarah is a dear friend of mine, and I have a huge amount of admiration for her after watching her journey through infant reflux with her daughter, which can only be described as she once put it , as “hell on earth”. I’ve been wanting to share her inspirational story for some time, to help raise awareness with new mums on how to cope with an infant reflux diagnosis. Thank you Sarah for sharing your story.
Infant Reflux : One Mum’s Journey through Silent Reflux
Thanks so much for joining us Sarah! My daughter had a very mild form of infant reflux which we were able to manage without medication, but I know there are very differing degrees of reflux that a baby can suffer from – some that absolutely require medication to survive the emotional and physical onslaught reflux can bring. Can you tell us about your experience with your daughter, Amedee?
Where do I start in trying to describe our experience? It was like being in a boxing match – but imagine not being a boxer and not knowing how to defend yourself, and taking hit after hit after hit with no one able to rescue you, and no bell at the end of the round so you don’t know when it is going end. You might get a reprieve for a day and you latch on to the thought “maybe things are changing”, “maybe she’s growing out of it” (which is what all the doctors kept saying) until the crying, the screaming, the not sleeping and the pulling off the breast return – and just keep coming.
Amedee was an extremely unsettled newborn, but as a new mum with nothing to compare it to, you just roll with the punches thinking it’s normal – and that you’re stuck in this hell hole. She was formally diagnosed with silent reflux at 3 months along with failure to thrive, and finally the paediatrician prescribed medication and we were admitted to hospital for tube feeding. However, that was just the beginning of our reflux hell hole.
Goodness Sarah, I can’t even imagine what that must have been like for you. For those reading, can you explain the main differences between reflux and silent reflux?
Many people often think of infant reflux as nothing major – you’ve heard the term happy chuckers? The Reflux Infants Support Association (RISA) describes it on their website “Reflux or Gastro-oesophageal Reflux (GOR) can be highly distressing for both baby and parents, particularly the mother. Gastro-oesophageal reflux commonly presents with regurgitating or posseting (heard of babies projectile vomiting?); however, there are many other signs that infants and children can display. Some babies reflux without it coming out of their mouths (termed silent reflux, although the term ‘silent reflux’ can be confusing, because silence is generally not one of the signs they exhibit). Silent reflux refers to refluxed material that flows back into the oesophagus, but isn’t forced out of the mouth. The child may swallow it back down or the stomach contents/stomach acids may not come up the oesophagus far enough to be swallowed. It has the potential to cause more damage because it can sit in the oesophagus longer than if the child vomited.”
What was your lowest point on your reflux journey, and how did you get through it?
There were so many low points. The breast aversion and the battle of every breastfeed, the failure to thrive, the screaming like she was being stabbed, the short 30 min bursts of sleep during the day and hourly at night, the hours I would spend trying to get her back to sleep to have her wake at the slightest noise (like my knee creaking!) and have to start the whole process again… the post-natal depression, the thought that I really didn’t want this baby and this was not what I’d signed up for, the head of gastro at a children’s hospital telling me that silent reflux didn’t exist and that unless she was projectile vomiting or vomiting up blood then there was nothing wrong, the feeling that everything I was doing was wrong and wasn’t helping my baby, the not knowing where to turn to find the help I needed… and the list goes on. All of that when I was severely sleep deprived almost broke me.
How did I get through it? I searched for answers and help and never gave up, and I managed to tread the political path of the medical system.
The Child Health Nurse (CHN) who did our home visit and taught our mothers group at the local health clinic suspected it was infant reflux, and each week at our weigh in she would send me to the GP but I wasn’t allowed to say the CHN thinks it’s reflux.
After 3 months of this, the GP eventually diagnosed it was infant reflux but wouldn’t acknowledge the severity. The paediatrician was also hesitant to prescribe medication because “she would grow out of it”. The head gastro at the hospital said it wasn’t reflux and wouldn’t prescribe stronger medication but nurses and other doctors in the hospital would tell me that they didn’t agree with the head gastro but didn’t want to go on record. I had to threaten another specialist to leave Amedee at the hospital if I was not given a repeat prescription of stronger reflux medication upon discharge. It was all so disheartening. But I kept pushing and through talking to people you find little snippets of info of things that can help and people who do know how to treat it – eg dairy and soy can trigger reflux so try removing them from your diet.
I can’t believe you had such a hard time getting the proper diagnosis and medication! Good on you for pushing through – as Mums we just have to follow our instincts! What do you think your biggest learning was as a new mum going through all of this?
That all babies are different and as a new mum with a sick baby I thought the medical professionals would have all the answers to help me. I was sorely mistaken. We ended up seeing a biomedical doctor at 2 years of age to work on the root cause of the issue rather than just masking the symptoms with the reflux medication. We saw an incredible improvement. I have learned so much about how our digestive system works and why reflux occurs in the first place and the things you can do to help stop it. Any adults out there who currently take reflux medication, I urge you to look further. The drugs have such horrible side effects and can have long term complications. If there was a way of healing your digestive system so you didn’t have to take drugs, wouldn’t you like to do that? There is a way and at the very least there are more natural solutions to manage it that don’t have the nasty side effects of pharmaceutical medication. Think about it for yours and your child’s long term health’s sake.
How old is Amedee now, and does she still suffer at all?
Amedee is now 4 and is the happiest, cheekiest, funniest little girl. We were able to wean her off her reflux medication over a year ago and we were officially discharged from her gastroenterologist earlier this year. However, her battle still continues. Her digestive system functions poorly and we are working with a holistic approach to fixing that and have seen a huge improvement in the last two years. She still battles with constipation which can lead to reflux (think of it this way, if there is nowhere for the food in her stomach to go because she is clogged up, there is only one way to go – back up). A change in diet or too many starchy foods can clog her up, and we saw her most terrible bout of reflux in about two years when she started preschool this year.
What should new mums look for if they suspect their baby has reflux – when should mums seek help?
All babies are different as we know. It’s the same for infant reflux bubs. They can present with different symptoms (especially if they are silent refluxing which makes it incredibly difficult to diagnose). Some of the common symptoms are listed on the RISA website. If your baby is displaying signs of: Irritability, excessive crying or screaming; vomiting, posseting or regurgitation; appearing to be in pain; recurrent hiccups; ‘wet’ burp or hiccups; congestion, ‘snuffling’ or appearing to have a cold; bad or sour smelling breath; feeding issues; sleeping issues amongst others then your baby could have reflux. They may display some or all of these signs.
Can you recommend any resources or websites that may help mums navigating their way through an infant reflux diagnosis?
Absolutely. The biggest help and support for me was found through the Reflux Infants Support Association. They are a not-for-profit organisation run by volunteers and for a small fee you can join their private support group on Facebook where you can converse with other mums in the same predicament, ask questions and vent with people who will truly understand. This was my lifeline. You can request a call and a volunteer will ring you and you can talk over the phone about what you’re going through and things you can put in place to help. I couldn’t recommend them highly enough. I have made new friends through this group and am now in business with one of them helping bring natural medicine, clean living and emotional wellness to people’s homes through essential oils.
If you could share one piece of advice for new mums, what would it be?
Don’t give up. It will improve with time. Keep pushing and advocating for your child. Find people who have come out the other end and ask them what they did. Ask which medical professionals were able to help and go see them. Most GPs are not fully trained in how to diagnose or treat severe reflux and I would say the same for most paediatricians. You have to search for the ones who are. After 4 months we found a gastro paediatrician who specialised in reflux and was only one of two doctors who was able to refer to the gastroenterologist who specialises in treating reflux. The gastroenterologist was then able to prescribe specific reflux medication based on how fast my daughter metabolised it. It helped immensely at relieving symptoms but it wasn’t until we took a holistic approach that the symptoms disappeared. And we all now get a good night’s sleep. Every night. And my sanity has all but returned. Hallelujah! Thank you for letting me tell my story.
If you suspect your infant has reflux, make sure you seek medical advice. For further information, take a look at the Reflux Infants Support Association.