Gastro-oesophageal reflux is so common it can be seen as ‘normal’, or even trivial, and people often do not understand how difficult life can be for many families, or understand the impact reflux can have on their lives. They may think of it erroneously as ‘just a bit of vomiting’, or ‘just a behavioural issue’.

They don’t see that it can impact on the child and family in many ways. Not only can reflux affect a child’s eating, sleeping, growth, behaviour or quality of life, it can also affect relationships between partners and other children, the family’s quality of life, their finances and even their leisure time. The truth is, only families who have experienced it firsthand really understand.

Many families say they:

  • Have difficulty getting people to believe just how bad the vomiting and/or screaming really are
  • Receive conflicting and confusing advice
  • Become socially isolated
  • Feel like failures as parents
  • Have family and friends who just don’t understand

Through talking to many reflux parents, it is obvious that reflux can have an enormous impact on families, and many cases of reflux are not JUST reflux as is commonly thought! There is an enormous range of ways reflux presents in children; from mild spit-ups, to full on projectile vomiting; from irritability, to screaming, and more. It makes sense that the impact of reflux will be different in every family as well; with some able to take reflux in their stride; for others it’s simply not possible. Living with a child who suffers from ‘reflux’ can be extremely stressful and overwhelming for everyone.

Parents, particularly mothers, may believe they lack basic parenting abilities and feel like failures, and it is easy to see why they often feel confused, inadequate and upset. They can feel helpless to comfort their baby, and may even have difficulty bonding with their irritable child, they can lose confidence in themselves, and the experience can be a long way from the joy of parenthood. Even those with other children can begin to doubt themselves, and feel they have lost their skills.

There may be an enormous amount of extra washing if their refluxer vomits, and it may be more than just the baby’s clothes- it can be bedding, their own clothing, and even furniture. Social isolation can also be a problem because of physical and mental exhaustion; and an outing with a refluxer can just seem too difficult. The relationship can suffer with their partner and it can be difficult for each to understand the other’s perspective.

Despite the immense trauma many families suffer from, it can be difficult for them to find, or even ask for help. Other people have trouble accepting that reflux in babies or children can cause pain (even though they can accept it does in adults), and because of that, many don’t understand how difficult reflux can be, or why the family would need additional support. In light of that, parents, especially the mother, often ‘pretend’ they are coping. Some may be reluctant to let families or friends help, or even admit they need it. It can simply be their way of dealing with the trauma. Many start to doubt themselves, and play ‘mind games’, with the scenario going around and around in their head; “Maybe it isn’t as bad as I think it is”; “Maybe I’m just exaggerating”; “Maybe this really is normal and it is just me”; “Maybe I’m just doing it all wrong”; “Maybe it is my fault”; “Maybe I’m just not meant to be a mother!” This can add to their sense of confusion, and feelings of inadequacy, or failure as a parent.

It is important for reflux families to know that they are not failures just because they struggle to cope with the situation. Caring for a reflux child can be exceptionally difficult, exhausting, confusing, and very isolating, and it is important that this is recognised, and that they are able to get the support, reassurance and understanding they need. This may still be important even if the infant is suffering from relatively uncomplicated reflux, but of course even more important if the infant suffers from more severe reflux.

Comments from reflux families:

  • Everyday can be torture with a sleep deprived baby and sleep deprived mum, the constant doubts and questioning every little thing to try and solve your own puzzle. I often think that one of the worst elements of life with a reflux bub is that it is constant- no breaks, just an endurance test 24/7.
  • Not only do we deal with reflux, we deal with our isolation from people who just don’t get it, financial stress from medical costs, fragile marriages, guilt, resentment, frustration, anger and on it goes.
  • I really got tired of everyone else – friends, some family, etc saying to me “well at least she’s healthy” when I mentioned my daughter had reflux, but they really have no idea what happens in our daily life.
  • At mother’s groups I feel so isolated because nobody really understands what I’m going through; and worse, I feel judged because everyone tells me what I’m doing wrong, why my baby is waking/crying/not eating etc

© Written by RISA Inc, revised by Glenda Blanch, RISA Inc member and author of “Reflux Reality: A Guide for Families” 2010
Information reviewed by Mary da Silva, Nurse Unit Manager, Gastroenterology Unit, Royal Children’s Hospital, Brisbane

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