UCD 2021 – Terri’s story

I am Terri, proud mum of four children born between 2011 and 2016. It wasn’t until my youngest child, Teddi, was born and poorly all the time that I noticed things about my middle two children too. My middle son, Blake, was found to have a type of cleft called bifid uvula (two dangly things in the throat) and my daughter Maia has an unusual lump in her throat between her tonsils, coming up from behind her tongue. My eldest boy, Lucian, didn’t seem to have anything visible like his middle siblings, however, he did have to be resuscitated at birth, like my youngest boy, Teddi.

Teddi was also resuscitated and ventilated at three months and 12 months old due to severe breathing difficulties. The second time he was ventilated he was in hospital for a month and diagnosed with an unsafe swallow. We came home with a NG tube and 18 months later he had an operation to fit a Mic-Key button. During this time his sister was investigated for the unusual lump in her mouth and the doctors discovered it was a rare disease where she was born without a thyroid gland in her neck, instead she had ectopic thyroid tissue attached to her tongue. She is now on hormones until she finishes puberty when they may remove it due to the risk it can have on breathing, swallowing and increased possibility of cancer.

Lucian is now nine, Maia is eight, Blake six and Teddi four. Teddi started reception last September at an SEN school, due to having learning and communication needs as he is globally delayed. In 2018 we joined SWAN UK when we started genetic testing to try and find a reason for all the things I have mentioned. At the genetics appointment they said that Blake has a pectus excavatum (dip in chest) and the GP later said Lucian has one also (he did not attend the first genetics appointment). Although Maia is diagnosed we are not supported by any other organisations – she just sees her endocrinology (hormone) doctor. The other three are still undiagnosed and although Maia is diagnosed with a rare disease, we may find there is an underlying genetic cause for all four of their overlapping symptoms.

We managed to attend one SWAN UK meet-up at Hatton Country World before the pandemic, which was lovely and their Facebook groups are a great source of help to me and somewhere I turn to when I am struggling with everything.

This Undiagnosed Children’s Day I am simply celebrating my blessings that I have four amazing children and that Teddi is still here thanks to medical care from Birmingham Children’s Hospital and of course the ambulance and air ambulance services. I am so proud of my children – they have been through so much at such a young age but through all the appointments and tests they still come out smiling.

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