Harper’s Journey- Awareness Week 2020

When our little girl was born, we were so excited but I also was under no illusion being a parent was going to be easy. Harper was unsettled from day one, she fed constantly, and I felt grateful I could breastfeed, but this meant she fed every hour, day and night. I was told I had to stretch her out, she was snack feeding. Then the screaming, this would go on for endless hours.  I was told “this is witching hour” and “she will grow out of it”, then we were told “oh it’s colic”. The amount of times I got told “it’s hard being a first time mum”, made me feel like I was doing something wrong, my baby was normal but I possibly wasn’t coping. 

When Harper was 3 months old we were given a script for reflux medication in the hope this may help a bit. We never noticed a change, her doses were increased but we simply were led to believe we just had to manage her symptoms, with no real help, support or guidance. At 6 months of age, my milk stopped coming through and suddenly I couldn’t cope anymore. We sought help to get Harper onto a bottle and support with her sleep. After a week at a facility, trying to teach Harper to ‘cry it out’ we were referred to the mother craft unit. They all believed Harper was just stubborn.  We spent our time at mother craft and returned home with no further answers or help. No one really seemed to believe she had reflux, or if she did it was just mild and not the reason for the sleep and feeding issues.

We continued to struggle. At 10 months old Harper began projectile vomiting almost daily. This rapidly increased to her having periods of vomiting 6 times a day. We were sent to hospital numerous times because she would become dehydrated, but no one would listen to us. Harper stopped eating and was losing weight. This went on and at 13 months of age she had dropped down to just 6kgs. We were finally admitted, but the next day we were told by a paediatrician that Harper had reflux and we had to manage her symptoms at home. I lost my mind! How could they say it was ok for a child to continue to loose weight while her symptoms were getting worse? We demanded a second opinion, and a pair of young junior surgeons came to see us. They quickly agreed that this is not ok and we all needed some answers. They booked her in to get an endoscopy done the next day and said they would take some biopsies if needed. They also said they would do a pH study. We were relieved to hopefully, finally get some answers.  Those 5 days were the worst of my life, Harper reacted to the anaesthetic and needed sedating, her hands were bandaged, and she was so unwell. I did not sleep for most of the 5 days we were up there. The results finally came back and there was significant damage done to Harper’s stomach, blood staining and the beginning of what appeared to be ulcers. The PH study showed a high reading for reflux. We were simply given a higher dose of her meds and sent on our way again.

This was all over a year ago, Harper turned two in February and we still struggle with her symptoms.  We have 6 monthly catch ups with a paediatrician. We have worked so hard as her mum and dad to build a better relationship with food, to try and read her signs and do what we can to ensure she lives a normal life. Her vomiting has slowed down, but I still live in an anxious state about my girl’s health. I really struggled with the aftermath of having such a sick little girl, and my doctor suggested at one stage that I may post traumatic stress disorder from it all. To be honest I wouldn’t be surprised. GRSNNZ has helped me by being a place where I could relate to others. No one else I know has any idea what reflux really is. For those that suffer it is much more than just a “spilly” baby. I wish I had known about the group earlier as we felt so alone when going through the worse of our journey. The other families in this group are so amazing and very strong, always advocating for a better life for their young ones. I am proud to be part of such an awesome group.

I think one of the hardest parts is that reflux can appear as an invisible disease, from the outside Harper looks like a healthy and happy little girl, it makes it hard for others to believe what we all live with, the sleepless nights, the stress about food. But I also know that Harper is so strong and such a fighter, and I really hope that stays with her for life. 

© Tarsh and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust May 2020.