Today I’m interviewing Roni Maclean, creator and moderator of www.InfantRefluxDisease.com and author of Life on the Reflux Roller Coaster. Roni has a now almost 8 year old daughter who, as a baby had the more severe version of infant acid reflux; GERD (GastroEsophageal Reflux Disease) and still suffers from it. Here is my conversation with Roni:
AC: Roni, was it hard to get an initial diagnosis of reflux? Information was very sparse 8 years ago.
RM: It was incredibly difficult to find information and help back then. The doctors weren’t aware it was reflux at all until she started throwing up. Initially severe feeding aversions were her only symptom and they were truly stumped. Once she started vomiting, however, they began to suspect reflux and thankfully they have always done a wonderful job of treating her appropriately. She just happened to be a kid that didn’t respond to treatment.
AC: What was the range of emotions you experienced and then what did you do about it?
RM: I was very frustrated, depressed and helpless and felt a great deal of pity and pain for Shae-Lynne. I had no medical background but I started researching the disease shortly after Shae-Lynne’s diagnosis. The lack of information and support that I had were very frustrating and I wanted to reach out and help others going through what we had been through. I started a website early in 2001 which included information on reflux and GERD. Because of the overwhelming response I received from www.infantrefluxdisease.com I knew more needed to be done. I continued researching and writing, and together with my mother Jean McNeil Life on the Reflux Roller Coaster was born.
AC: For those of you who have never heard of it, Life on the Reflux Roller Coaster is a highly acclaimed “must read” and was the first book ever published which was dedicated entirely to infant reflux. What really turned the tide for you?
RM:The first big change came a few months after her jejunostomy surgery. She began to actually slowly improve slighty. Then in the past year or so we’ve seen even more improvements with her vomiting finally slowing down.
AC: How did you finally reconcile your notion of what having a baby would be like with the reality of actually having that baby and it being sick?
RM: How? I guess because I had to. Two choices, live in misery pitying myself and her (which believe me, I did spend time doing) or accept that whether she’s got GERD or not, she’s still my beautiful, sweet perfect little girl. At some point I also realized that everything we had been through with her, made her who she was and she was pretty great just the way she was.
AC: Roni, it’s so all-consuming when you have an infant with acid reflux that it takes over your life. What steps did you go through to restore your sense of individuality again after dealing with your daughter’s needs for so long?
RM: I didn’t until just this past year. I spent over 6 years living her condition, living it in real life with her and living it online with my website. Last year I finally just burned out and had do something for me. So, I started taking care of myself, working out and eating right. I can be a better mother if I can give her 100% of myself and I couldn’t do that until I got myself back.
AC: That is great advice. What other advice would you give new parents struggling with caring for an infant with reflux?
RM: Get a support group and get educated are two of the most important things. Also, I think it helps to understand that things could be so much worse and that it truly does get easier.
AC: What is the single most common thing you see parents on your boards struggling with?
RM: I really don’t think I could narrow it down to just one. Lack of support from family and friends is huge. Listening to non stop crying and watching their babies in constant pain is also excruciating.
AC: And what seems to be the thing that helps them the most?
RM: Finding the site. You can almost hear a sigh of relief when they find other people going through the same things they are.
AC: Your dedication to your site is amazing – every time I visit it you’ve added so many new resources and topics. It quite simply is one of the best, most respected sites on the net for information and support for those with babies and children suffering from GERD. The depth of detail and the breadth of related conditions you cover such as oral aversions, g-tubes and sensory integration issues is phenomenal. My favorite part about your site is the support boards for reflux and various related conditions. You actually have a separate “Ask the Experts” thread where members can ask questions from a Medical Professional, Pharmacist, Speech Language Pathologist, Respiratory Therapist, Occupational Theraptist, Lactation Consultant, Massage Therapist and Therapeutic Riding Instructor (for Sensory Integration questions).
Roni, you’ve accomplished so much in the last 7 years in the field of infant acid reflux – any plans for the future?
RM: Oh of course. There is still quite a bit more information I want to get added on several different topics and lots of existing areas that I want to expand upon. I have tons of plans for the site and a lot of exciting applications want to have created which would be a huge benefit to it’s visitors I believe. Unfortunately, these plans have been on the back burner for several years; however, because the site is not-for-profit, we just haven’t the funds to implement those plans.
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