infant reflux - why is this so hard?

RMacLean
March 2005

In order to survive your child's infant reflux or GERD, you really need to understand that you are not the only one having difficulty managing. Of course, you already know how stressful and exhausting it is, you are living it, but to really understand, from a practical, intellectual standpoint can make all the difference.  You need to know that it's not just you and that it is really, just very hard. There are several aspects of having a baby that is suffering from infant reflux or infant GERD that make it particularly difficult for parents.

The emotional stress infant reflux puts on the family can be unbearable and is absolutely limitless.  This can affect every single aspect of the entire family.  Babies with reflux are well known for spending a great deal of time upset, irritable, crying and even screaming the most intense, piercing screams one could ever imagine.  Parents, by nature, are programmed to respond to a crying baby and address the reason behind the crying.  It's heartbreaking for a parent to not be able to help their baby in times of great need.  The more the baby cries, the more stressed and upset they can get when unable to comfort and help the baby.  Some may even secretly begin to have feelings of dislike or anger towards the baby for being so difficult and unhappy.  Such feelings can make the parents feel even worse since they know they are not supposed to feel that way.  Feelings of guilt and sorrow can begin to emerge.  Guilt over not being able to make the baby stop hurting, and for mothers, also in wondering what they could have done during pregnancy or delivery to cause the baby's reflux.  Parent's can feel sorrow and deep sadness coming to the realization that the perfect, happy and healthy baby of which they dreamed, does not exist and they instead, have a baby with great health demands and possibly special needs.  Many things that other parents and babies are able to do, may not be possible and they almost mourn the healthy baby they had expected and all the things they are missing. Sheer exhaustion can magnify all these feelings as babies with reflux are notoriously poor sleepers, sometimes sleeping only an hour or less at a time through the night.  Other children in the family can begin to feel left out or neglected when the new baby demands such intense and constant care far beyond the enormous amount of care that baby's normally require.

Moms can get particularly tired and frustrated in frequently being the primary caregiver, they can become the only person that has any success in feeding or comforting the baby.  This adds extra demands to mom and can leave dad feeling helpless, left out and frustrated in not being able to do more to help.  This can indeed put added pressure on the marriage.

Many parents begin feel isolated from their family and friends who just don't understand how hard it is and how much their baby actually suffering.  Well meaning loved ones can sometimes dismiss new parent's concerns as being over reactions and unwarranted. They may inadvertently blame the parents, saying the baby is spoiled or needs to be left alone to cry it out. This can leave parents feeling like maybe it is their fault or something they are doing wrong, adding to the stress and feelings of guilt.  When you are already struggling to get through each day these comments, or lack of support from those you love can be devastating and some may begin to pull away and avoid their family altogether, at a time when they really need all the understanding and support they can get.

Many times, particularly when the baby has GERD and the possible development issues and special needs that can accompany it, mothers may have a difficult time being around other mothers whose children are happy and healthy.  Everyone wants their baby to be the smartest and healthiest and when they are not, or begin to fall behind their peers, it can be very difficult to accept.

Doctors, who are expected to know all the answers and fix the baby can become an added burden to parents who perceive them to be unwilling to help or even listen to the parents concerns. They are asked to wait weeks or months for appointments, or test results, and then may not get any real answers or solutions anyway. They are carted from doctor to doctor, each saying the next will help.  They are asked to make decisions when they have little understanding of the pros and cons and they do not know whom to ask or where to go for an impartial opinion.

Financial issues can begin to arise, when expensive formulas, medications, and numerous doctor appointments or hospital stays get too much for the household budget.

Overcoming these ever present issues can be a daily battle, but is possible.  Some days you will thrive and come out on top, feeling like you can handle anything, other days will be more difficult and you may just want to crawl under a rock.  The trick is getting the number of good days to slowly outweigh the bad and there are ways to do this.

The first thing to help relieve the stress is to actively work on helping your baby in every way you can. 

• Start now with the 14 simple ways to reduce infant reflux that we have listed.
• If this doesn't give baby enough relief decide whether or not it might be time for medication and if you believe it is, read up on the different medications used to treat infant reflux so that you can be sure you know enough to be the best advocate you can be for your baby. You need to understand; however, that not all medications work equally effectively for all babies.  For many babies finding a treatment option that works can take weeks or months of trial and error with different medications and formula combinations.  But once you stop expecting a quick fix and realize that this will likely be a long, hard road you can begin to better focus on the task at hand.
• In some cases, the lifestyle modifications and initial medications will not help, this may be an indication that referral to a pediatric gastroenterologist might be the next step.

There will be more on actively helping your baby in a future article, for now the next thing you need to do to survive is learn acceptance and get some peace.  It sounds easy, just accept it and move on, and although it's not even a little easy to get to that place, it can be the best thing you do for yourself and your baby.  Although for most babies, relief can be found through any of the treatments listed on this site, for many there are no magic cures, no easy answers and it's more than just a little heartburn or spit up.  Remember that it's not the baby that's bad or being difficult, you have a chronically ill child, that's reality, it's not fair and it sucks, but it's reality.  You can handle it two ways, let it consume you and completely take over or rise above it and live simply with the peace of loving your baby exactly the way they are.

Things may not be going exactly as you envisioned when you were pregnant and planning for the little one and as hard as it is right now, it could be a lot worse and it will get easier.  Try starting a personal diary and writing about how you feel.  Join the message board and seek out support from others that have been there and understand what you are feeling.  Reach out and help others in the same situation, make something positive come from your child's illness.  Take every opportunity you possibly can to get a break, even if it's just to lock yourself in the bathroom for a hot bath while hubby rocks the baby to sleep.  Sleep when the baby sleeps, this is especially important with refluxers, because you never know when they will actually sleep again.