Our current President, Carla Cram, shares her reflux story.
Tell us a bit about you and your family
I’m a mum to two young boys and married to my husband for five years. My husband and I had a very busy life building and renovating two homes before we started our family. I had a career in Corporate Communications and we did a little bit of travelling. When we fell pregnant with our first child Ripley, we were not really expecting it and so it took some time to adjust. We had been told we were unlikely to fall pregnant naturally as I suffer from endometriosis, but it happened immediately. When I was 37 weeks pregnant, my OB noticed my stomach measurements were way behind and sent me for an immediate ultrasound. They discovered Ripley was severely growth restricted and blood flow of nutrients was being diverted to his brain to preserve his life, a medical emergency. I was induced (and my husband put on a plane from Scotland where he was on a business trip!) and after 36 hours, Ripley arrived. He was in distress and struggled with severe respiratory distress for a week due to being severely underdeveloped – he was more like a 30-weeker and was treated as a premature baby from birth. He developed bacterial meningitis as well and spent four weeks in the hospital.
How did reflux begin for your family?
During our NICU and SCN journey, reflux and allergies were not evident. It wasn’t until the first night he was home we observed he was extremely noisy at night and he seemed to have a lot of stomach pain. He sounded like he was gasping for breath and choking. We called the hospital around 4 am to ask, and they said he was very gassy and not to worry. He was breastfed, something I’d fought extremely hard to achieve, but in that first couple of months at home, we played around with formula because we didn’t have adequate support to work out the issue. A decision I believe set off an extremely severe case of reflux and allergies that we are still trying to unravel today. Those early days began with hiccups and some unsettled behaviour after feeds such as not falling asleep, burping and some vomiting, but over the first three months, this became more and more difficult, to the point where Ripley was screaming all day, could not settle even in a baby carrier and began to refuse feeds. His bowels were diarrhoea and mucus and then around 4 months on advice from a paediatrician we began reflux medication, which combined with his allergies caused constipation.
What did reflux look like for you? Was it simply the symptom or did you have other complicating factors?
Ripley was so unsettled and his inability to sleep was severe. Many health professionals suggested sleep school but it didn’t sit right with me and I knew they would ultimately not be able to do anything anyway. It was clear to me Ripley was in a lot of pain. In the beginning, when he was diagnosed around 4 months with GORD, we did not really understand his allergies. I immediately cut dairy and soy out of my diet, but Ripley would go on to have many allergies, and also food intolerances that caused significant distress even through my breastmilk. He was reacting to food proteins through my milk, but then when he did start solids properly around 6 months, he began reacting to every food, although in hindsight, we didn’t really notice it enough. For us, the most difficult aspect was his pain; he would literally scream for hours and hours every day. Sometimes he would scream for 8 hours through the night, passing out from exhaustion for 20 mins, just to begin again. It was not only tiring but very scary. We found it very hard to get support. It wasn’t until he was about 18 months old that we began to understand it was food that was causing so much stomach pain, which in turn was causing the reflux. My husband and I took turns to hold him upright in an armchair through the night, as it was the only way he would sleep.
Did you manage to get reflux under control? And if so, at what age?
We did not get it under control until he was 2.5 years old. This is quite unusual and is complicated by other issues and diagnoses he ultimately faced later. Despite many medication changes and elimination diets, it was so severe that time was one of the key factors, along with a combination of two different elimination diets with the FODMAPS diet playing a key role. Throughout those 2.5 years, he did have periods where it became more manageable. When he was able to sleep lying down (18 months), we managed to get more rest but he still woke hourly or worse. After his tongue and lip tie revision, he began to eat solids and wasn’t so reliant on breastmilk.
What other issues did you face?
Ripley also had a lot of other issues including obstructive sleep apnoea, oral restrictions, feeding issues and ultimately autism spectrum disorder. At 2.5 years of age, our paediatrician diagnosed him with autism and suddenly his sensitivity to pain and the way he would react to many situations made sense. By working on his medical issues, we had begun to uncover the developmental issues.
We didn’t have a lot of support from family and friends; they didn’t really understand what we were dealing with. Unfortunately, the term ‘reflux’ is interpreted as a bit of spit up when really what so many of the children in our organisation deal with is much more severe, and the impacts to the family are truly catastrophic. We struggled to participate in normal activities; we couldn’t attend family events, go to the library, attend structured activities and just getting through a day at home was essentially a nightmare.
What helped the most?
Elimination of foods made the biggest difference, combined with time. In hindsight, I wish I’d been able to look at it more holistically and been able to address some of the issues earlier such as his ENT and feeding issues, which were not addressed until well into his second year of life.
Being part of RISA was hugely important because we were made to feel hysterical by many doctors and friends/family. I was also pushed to stop breastfeeding more times than I can count and this would not have helped at all. Medication definitely played a role but without the food elimination, it was just masking a problem and was never truly effective for us.
Because Ripley had developmental and mental health issues, we saw a local service which was the catalyst to dealing with those problems and getting a diagnosis of autism. Finding people who would listen and help was invaluable and offered us the opportunity to have our feelings validated.
How did it impact your family?
The impact of this entire journey has been extremely difficult for our family. The combination of a critically ill newborn and then severe reflux caused PTSD for me and trauma for my husband. Ripley also has PTSD which is extremely confronting and something I don’t share often as most often it’s dismissed as impossible. Because most people cannot understand or relate, they tend to be dismissive accidentally which can be very hurtful. Even now, Ripley is almost 4 and I am still extremely affected by it.
In a positive sense though it has given me greater empathy for anyone facing a difficulty. We recently had our second child Bowie, now 7 months, and he is the beneficiary of our knowledge. He has reflux too but luckily (thankfully!) it is well managed with food elimination and he is not medicated! Time will tell whether he too has autism but at the moment it is absolutely wonderful to have a happy thriving baby (even with allergies).