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When my son Phoenix was born in September 2011, we were like any other parents – besotted. But in the weeks that followed, elation turned into worry and despair. Phoenix was very unsettled. He wanted to feed ALL THE TIME. I had very little milk, he was losing weight and no one was getting any sleep. We were told to keep persevering, keep breastfeeding, everything will be fine. Everything was not fine.
I could not keep up with his feeding. I could not stop him crying or put him down to sleep. We rocked him upright for hours on end, day and night. Then, Phoenix started to get very sick. Ear infections, tonsillitis, respiratory problems all plagued him constantly. Each time I took him into the doctor they sent me on my way with antibiotics and saying not to worry. The medication never worked and the infections never cleared. We were in hospital regularly and I was at the doctor constantly with no diagnosis and no change. For months I was told he was a healthy baby with ear problems that he would grow out of.
With no end in sight and desperate to help our little boy, we sought out a good ear, nose and throat specialist (ENT) to solve Pheonix's chronic infections. At nine-months-old he had emergency surgery on his ears, tonsils and adenoids, and was on a permanent course of antibiotics. But still his pain continued. Even the ENT was puzzled. I asked repeatedly if there could be any underlying cause. My gut told me that it wasn’t all caused by viral infections. Could this really just be something he would grow out of?
When Pheonix was 15-months-old, my second son Nash was born. By the time Nash was 10-days-old, I knew we had been here before. Nash was a vomiter. He was also terribly unsettled and cried constantly. For four months we carried him for 20 hours a day. He had ear infections, tonsillitis and bronchiolitis constantly. He never slept, would vomit, eat then vomit again constantly. He had sleep apnoeas, mouth ulcers and was completely dependent on milk, 24 hours a day.
We were beyond exhausted and felt desperate, alone and terrified. Why were our boys so chronically ill and distressed? I knew I had to take matters into my own hands. I just could not bear to see my children in pain any longer. Pheonix was 22-months-old and Nash was just 7- months-old, and I believed that neither should have had to tolerate such chronic pain.
We decided to fly from our home in Broome to Perth to meet a paediatrician to help our boys. We had found a paed there who came highly recommended.
But at 4am on the morning before we left I finally found the answers. I had come across the Reflux Infants Support Association (RISA) website. Tears flowed and I remember my entire body being consumed by relief and grief. Reading the list of refux symptoms was like checking off my sons' medical records. Finally I knew what we were dealing with. I woke my husband and said, “The boys have reflux”.
So we travelled down to Perth to meet our paediatrician, who was brilliant. He diagnosed Pheonix and Nash with Infant Gastro-Oesophageal Reflux Disease (GORD), which is commonly known as "Reflux". Our paediatrician immediately put the boys onto medication and ordered urgent tests for them.
The first procedure involved the boys drinking a special liquid in their milk while a radiologist viewed them under an x-ray. This was one of the biggest moments of my life. Nash’s stomach contents freely flowed all the way back into his mouth. The radiographer said it was the worst reflux she had ever seen… and I bawled from sheer relief.
The severity of their reflux meant both the boys needed to undergo major stomach surgery to prevent the ongoing flow of acid out of their stomachs. We returned to Broome and started planning to move permanently to Perth for their treatment.
In the two months that followed, the boys had many procedures due to the severity of their reflux. Various scopes showed that they both had severe inflammation and pre-cancerous cell changes in their oesophagus as well as damage to their lungs and sinuses from continually breathing acid into their airways. At the time of their stomach surgeries, Nash was 11-months-old and Phoenix was 2.5-years-old.
Although the boys' recovery was an arduous, six-month process of them learning to eat again, the change in the boys was unbelievable. For the first time in their lives my children were no longer in pain! They slept and played and were no longer sick all the time. They will continue to have gut problems but I truly believe that that surgery saved their lives.
For us as a family, the healing process has only just begun. Pheonix is now 3-years-old and Nash is 2-years-old. We have more good days than bad, but it will take a long time to piece together the broken parts of our hearts, to find our “normal” and to finish grieving from what we all suffered.
Thank goodness for RISA and for an organisation that saved my children’s lives and gave me the support and encouragement I needed to follow my instincts. I am so blessed to have found them. I now volunteer to help other parents to deal with reflux and it's devastating effects. That’s my way of giving back and healing my soul.
Infant GORD affects 1 in 5 Australian babies. If you have a child affected by infant reflux visit the RISA website www.reflux.org.au for great reflux support and information.
You can request to have a phone chat with one of the RISA volunteers or join their Facebook forums.