GERD/Reflux

I apologize in advance if this post turns into a rant. I know most of you expect, and enjoy, our light-hearted posts--this isn't one of them. I also do not intend to sound ungrateful--we thank God daily for Carter's life and we thank Carter daily for fighting to live. I would take our current difficulties ANY DAY over what Carter's been through. But, after speaking with several parents, of both CDH children and those with GERD (Gastroesophageal Reflux Disease), we have all become frustrated that the difficulty of feeding these children is not discussed at more length. It seems that support groups abound for CDH families, but once you get home, that support wanes as your issues transition from life-threatening to just frustrating (although in our view, refusal to eat is life-threatening). Perhaps it has much to do with "survivor's guilt," which weighs heavily on us. You feel like you don't have a right to complain; it's very hard to talk about. So in light of the many discussions I've had with other families, I want to bring awareness of some these issues to the friends and families of anyone trying to cope with a child with GERD.


We are not asking for help--there's not really anything you can do to "help." So many people ask what they can do, and we have no answers for them b/c if we knew what would help, we'd be doing it. I'm not writing this for pity either--I just want to get the information out there so other parents know they are not alone. We've had a few recent incidents of people getting upset with us for not having time for them--I hope this helps you to get some idea of what goes on.


What you can do for us and these families is simply try to understand. Understand when we have to leave early or arrive late; understand when we don't answer the phone or forget to return phone calls; understand that we keep the ringers turned off on all the phones because IF we finally get Carter asleep so he will eat, the slightest noise (from a cough/sneeze, a knock on the door, people talking even at a whisper, the list goes on) will wake him up and then he completely refuses the bottle. Understand if we don't have the time for whatever it is you want because we're busy going to therapy (3 times a week), doctor's appointments (once a week), cleaning up projectile vomit (which happens multiple times a day), doing laundry from the vomiting, giving meds, cleaning bottles, cleaning feeding pump supplies, keeping detailed feeding journals, emailing/calling doctors and therapists for help...the list goes on.

To say it's stressful doesn't even begin to cover the emotions. Every parent should have the wonderful bonding experience of sitting down, with their child in their arms, and feeding that child. To the parent of a child with GERD, mainly those who have an aversion due to the reflux, this experience is heartbreaking. To know that you can't provide your child with the most basic of necessities is indescribable. You are robbed of an experience that many others take for granted. To know that your otherwise happy, giggling child can turn into the child from The Exorcist at the mere SIGHT of a bottle is unnerving. For example, you have all seen how happy Carter is. What you don't see is as soon as we begin to swaddle him, he stars screaming, tears streaming down his face; that as soon as we sit in the chair in his room that we feed him in, he immediately begins to gag; that he begins to kick, arch, cry, scream, and turn his head from side-to-side the moment food begins to pump into his belly from the feeding tube and it doesn't stop until he wears himself out and falls asleep. It takes 45 minutes to feed him this way; 45 minutes after the feed to hold him upright in a futile effort to prevent vomiting; 10 minutes to clean him up/change his clothes/change our clothes after he vomits--and all this happens every 3 hours....8 times a day! You do the math. Even after this whole process is over, you live in constant fear that he'll vomit, choke, and stop breathing or that he'll aspirate on the refluxing food and get pneumonia.

Parents of a child with GERD wish they can just pick up and go, but they are literally prisoners in their own home; their lives completely dictated by the feeding schedule. I would love to pack a bottle, put Carter in the car and just feed him on the go. But I can't. He will not eat awake and when he's asleep, there can be no distractions or noise. Even if we try to go out between feeds, we worry about if he's going to vomit while we're out and know that we have to get home before the next feed. We can't let others feed him b/c he's picky (imagine that) about who feeds him and it's such a delicate line between getting him to eat and making the aversion worse. We can't just "let him get hungry and he'll take the bottle." He doesn't eat because it hurts to eat and he knows he's going to vomit. To make him starving and then present a bottle, knowing that he desperately wants and needs to eat, but can't, is pure torture.

Again, I will say that we will take Carter's feeding difficulties any day over what we could be dealing with. We remind ourselves all the time that it could be much worse. We know how lucky we are.

If you don't believe me or want to read more about it, please browse the following thread: http://www.healthcentral.com/acid-reflux/c/71776/33595/comments

To all the parents out there who are reading this and saying "that's MY child!!!!"---you are not alone! Please feel free to contact us if you need to vent or if you have any secret suggestions. It's my hope that getting this very personal information out there will help just one family, and that will make it worth it.