Morrissey K.

Child, Nephrotic Syndrome

Over the course of 10 months, Mossy was constantly unwell. Each time she picked up a virus or infection, her eyes and face would become puffy and swollen. We spent a huge amount of time at the doctor’s with various suggestions, including conjunctivitis, allergies, etc., but I was very worried and always left the doctor’s feeling uneasy.

In December 2016, Mossy again picked up a virus. The swelling in her face was back, but this time it was also in her legs and stomach. She was lethargic and wanted to be carried all the time. She was also very pale. I started searching the internet for answers. I spent many hours searching, and all signs and symptoms pointed to the kidney disease Nephrotic Syndrome. Back to the GP I went. I told him I thought she had Nephrotic Syndrome. He told me she did not, and to stop Googling. But mother’s instinct told me something was very wrong.

By the next morning, Mossy had become so swollen she could barely open her eyes. I rushed her to hospital where she was admitted for almost two weeks. She was very unwell and needed albumin infusions, diuretics to help with fluid, antibiotics and constant monitoring, as her blood pressure was very low and she had fluid in her lungs and around her heart. It was an incredibly scary, stressful time. To see your baby so unwell and feeling so hopeless is something that really takes its toll. We had incredible care, though, and Mossy is currently on month three of treatment. We hope to wean her off medication by the end of June, and from there it is a waiting game. It is early days for us, but we are hoping for a diagnosis of Minimal Change Disease. Children are amazing and so resilient! We are so proud of our darling little girl.

This is so new to us, but I will say: educate yourself, ask questions, and if something doesn’t sit well with you, then speak up. Also, take time to look after yourself.