I was booked for a planned c-section in July, so we nervously turned up in the morning ready to meet our new little girl. As we sat there waiting to be called through, I don’t think either of us ever imagined how our lives were about to change.
They took Eva out. She cried but the look on the staff's faces told us something wasn’t right. She had a very unusual shaped head, she wasn’t breathing quite right and she wasn’t moving the way she should. Lots of doctors rushed in, and I remember just crying, begging them to tell me what was going on.
They took her to NICU where we later found out she had broken ribs, some freshly broken, others already healing. How?! How had my baby, growing inside me, been born with broken bones?! They also suspected she had other breaks in her legs and arms. More tests needed, X-rays, scans, many talks with doctors and she was diagnosed with severe Osteogenesis Imperfecta, also known as brittle bone disease. Her body doesn't produce enough collagen, so her bones are very weak and fracture very easily. Her severity also meant her rib cage and lungs were underdeveloped, affecting her breathing, her spine was unstable so could only be held flat or lie on her back and she also couldn’t feed due to oral aversion and severe reflux.
So at 5 weeks old, she was eventually allowed home, with adapted clothing so we didn’t need to bend her body, with training on how to hold her, change her nappy, give her a bath, with a tube for feeding, regular pain relief, oxygen and a lie flat car seat to protect her spine.
Whilst at home Eva's reflux didn’t improve and she ended up being admitted back to hospital a few weeks later with failure to thrive. This resulted in a feeding tube going past her stomach, into her jejunum, which stopped her vomiting and allowed her to gain some weight and come back home.
An eventful start to her little life, but she is now 22 months old, and doing amazing. She has unfortunately had many fractures, and needed a metal rod in a femur to support the bone, otherwise it would continue to break the more mobile she became, and she will need another rod in the other femur at a later date.
She is delayed in her development due to needing to protect her spine, and just having such an awful time in her first 6 months but she has recently started being able to sit up, crawl, babble, interact, play with toys and understand what is going on around her, which is amazing and something I wasn’t sure she would.
She has an infusion every 3 months which we call ‘bone juice’ which is always rotten for her but vital to help strengthen her bones. She continues to be tube fed and doesn’t need oxygen during the day anymore; she does need non invasive ventilation (bipap) overnight.
She is an amazing little girl, full of character, cheekiness and pure determination.