“We are very much holding on to hope that mitochondrial donation will be an available option to us.”
Joanne and Allan Mets's daughter Chloe passed away at 9months in January/February 2021.
Though we miss our girl so very much we feel so lucky that she was as well as she was for as long as she was. We understand so many other families just aren't as lucky.
Chloe was the most beautiful, complex, sassy girl and she was so brave her whole life and we are just so proud to be her parents. She fit more into her 9 months than many do in a lifetime. You can't have a kid like Chloe and not be changed!
Chloe is our first child and was conceived via IVF. We had a healthy pregnancy and uneventful birth. When Chloe was 6 weeks old we were referred to the Metabolic Clinic at the Women's and Children's Hospital in Adelaide following the results of her newborn screening test. Chloe presented as a healthy child. We were told by the specialist that Chloe's lactate and alanine levels suggested that she may have mitochondrial disease (mito) and explained there was no treatment or cure for a disease we had never heard of. We have no doubt that the monitoring and care Chloe received from her specialists at WCH gave us time that we might otherwise not have had.
With Chloe in good health we just had to wait for mito to present itself to us. Though there were some delays in development and issues with vision it wasn't until Chloe had her immunisations - which triggered an episode of acute distress and led to metabolic acidosis - that we really experienced the impacts of mito. These ‘mito episodes’ were unpredictable and traumatic but usually with quick treatment Chloe would be back to her happy self within hours much to the shock of everyone.
We had a series of about 6 weeks of short stays in and out of hospital with a number of episodes of metabolic acidosis but once she was on a series of medications, Chloe was relatively stable right up until her final day with us. During one of the short hospital stays Chloe got a diagnosis of Mitochondrial Respiratory Chain Disorder (MT ND3 gene). We understand that there is only one other case that has the same genetic mutation.
We experienced a short period of time where Chloe had infantile spasms but she received treatment immediately and recovered well from these. Chloe never had trouble feeding and often found the quickest way to pull out NG tubes when put in as a back-up when she was admitted to hospital. After a stable few months with Chloe’s health, we presented to the hospital on a Friday thinking she would bounce back like she always had but devastatingly by the Monday we had lost her.
Chloe's mito was unpredictable and extravagant. Even over Chloe's final hospital visit she had periods of stability before a rapid deterioration the day she died. Chloe kept people guessing from the moment she was born till the very moment we lost her. We often joked that Chloe did what Chloe wanted and you just couldn't compare her to anyone. There is no one quite like Chloe Mets! She was pure sunshine! Chloe taught us to always be brave, to find joy in everything and always smile with your whole face and we will continue to do that for all of our days.
During our time with Chloe my blood test also returned the same genetic mutation. This was unexpected as I have never shown any symptoms of mito. We are still in a process of understanding what this genetic mutation means for me and for us as a family. We believe that if mitochondrial donation is legalised it will provide the opportunity for us to have a child that doesn't experience the same devastating impacts of mito that Chloe did. We are very much holding on to hope that mitochondrial donation will be an available option to us.
Joanne and Allan Mets