Our expert, Jan Gambino, talks to another mom, Brandi about raising children suffering from acid reflux disease (also known as GERD). They share their thoughts on support, frustrations, treatment and life in this post.
Jan: I felt like Entertainment Tonight or Matt Lauer should have been there when Brandi and I had our first face to face meeting. This was a momentous event! We had been talking by phone about our kids with acid reflux for two years and we were actually meeting for the first time. Since she lives in South Carolina and I live in Maryland, we weren't sure if we would actually have an opportunity to meet. The only reason Brandi came to Maryland was because of acid reflux. Her son, Noah, had to see a specialist, requiring a two-day road trip with two children under the age of 3 with gastroesophageal reflux disease (GERD). She packed the car with medicine, food, feeding supplies for Noah's feeding tube and all the other "things" parents need for a week on the road.
Brandi: My husband Chad packed up this time and did a great job. I tend to over pack but he packed just the right amount. We stayed in a suite type hotel with a small kitchen and extra sink for preparing formula and washing syringes. Luckily, the hotel was able to give us two cribs. I always bring a portable DVD player for the car and the hotel room. I find that some hotels have limited children's TV options and the DVD player helped pass the time in the hotel room. You wouldn't believe the medication we need to take. I just pack EVERYTHING.
Jan: In the past, before the internet, parents often formed support groups so they could meet and talk. It was often necessary to drive a distance to a meeting and finding childcare for a sick baby was a constant challenge. Now, parents can meet and network with other parents across the globe by phone and the internet.
Brandi and I started talking a few years ago. Soon we were talking daily, weekly or monthly, depending on the ups and downs of her son's treatment. I sometimes talked to Brandi while I was in the carpool lane and she often talked while driving to a medical appointment until she arrived at the parking garage at the hospital and we knew the cell phone signal would quit. I even talked to Brandi in the Denver airport on my way to a meeting and while on vacation in Niagara Falls!
Brandi: When Noah was at his sickest point I was desperate for someone to talk to me who had been through the surgery for acid reflux. I was desperate to hear from another mom who had a child with life threatening complications from acid reflux. My doctors had made Noah sound so rare and uncommon. I was scared for my child's life and for the decisions I was about to have to make concerning Noah's life, my precious little baby. In the day of the internet, I sat down nightly and was all consumed trying to find other mothers who had children like Noah. I found similar children, but none exactly like Noah. Lesson number 1: every child is different! But, one day I found the Pediatric Adolescent Gastroesophageal Reflux Association (PAGER), a parent support organization, and asked to be linked to a trained parent volunteer. I wanted to talk to a person, not just e-mail another parent. I had no idea that Jan Gambino would turn into a huge mentor and, most of all, a huge friend. I certainly didn't think I'd get to meet her. I feel like I've learned a lot over the past two years, some from her, some from other resources and from my own experience. I know Jan has learned a few things from me as well. I am a seasoned mother of special needs children at this point. But, that being said, there is never a time when I talk to Jan that I don't learn something new.
Jan: When my daughter Rebecca was in the worst of the acid reflux years, I felt incredibly lonely. Some of my friends understood and listened to my stories and concerns. Others were not able to understand and turned away. It was important to me to find parents who shared my struggles and concerns. I am grateful to the friends who stayed by my side and I value my new friendships with other acid reflux moms.
I have talked with hundreds of parents of children with GERD by phone and e-mail. Some parents have one burning question and then they are ready to move forward. Others have children with ongoing medical concerns and must navigate the intensive home care and medical system on their own. Brandi was living my life when my daughter was struggling -- busy every minute of the day with feeding, medicating and coordinating the doctors, tests and treatments. I wanted to be the person Brandi could turn to and ask questions, tell her story and share concerns and frustrations.
Brandi has a positive attitude and abundant energy. She accomplishes in one day what most parents do in a week. Her children require extraordinary care and she has little time for anything else. I admire her ability and strength to keep going day in and day out. I know that when Brandi's children are older and feeling better, she will mentor another reflux mom.
It was nice to meet Brandi and talk in person. I enjoyed meeting Noah and taking a tour of the Inner Harbor of Baltimore. We had so much to talk about and Noah was a good sport about our non-stop talking!
Brandi: I think he enjoyed our tour as well. The highlight of Noah's trip was playing on an interactive mat we stumbled upon on our tour.
So, thank you Jan for allowing me to be a part of your life and for taking the time to talk to me in the airport and on vacation. Thank you for getting to know and love my child. Thank you for the advice you gave me that in turn saved my child's life. Thank you for always being there and being such a great friend and support!
Published On: February 22, 2008