Mimi is Christine Ikyemtu’s youngest child. During her pregnancy, birth and even in the first few days after she was born, there was nothing to suggest that Mimi would be any different to her three siblings. But after the family was discharged from hospital, Christine felt there was something wrong.
“She wasn’t crying or latching on to be fed. I was worried so we rushed her back to hospital and she was taken straight to intensive care,” said Christine.
Mimi had jaundice. And while this is very common in newborn babies, if left undetected, it can cause a type of brain damage called Kernicterus. The condition is extremely rare and affects less than 1 in every 100,000 babies born.
Mimi was taken for a blood transfusion but, by the time it was complete, her bilirubin levels, had gone through the roof, which caused her to develop Kernicterus. This ultimately led to Mimi’s cerebral palsy and auditory neuropathy.
To make matters worse, Christine was also hospitalised at the time because she had a serious infection. She didn’t have time to process what had happened and was shocked by Mimi’s diagnosis.
11 years of complex care without support
Despite Mimi’s complex care needs, Christine and her husband managed Mimi’s care without any support or intervention from a care team for 11 years.
Between them, they muddled through long days and even longer nights as they both worked, provided care for Mimi and focused on raising all four children. During this time, Christine worked nights, looked after Mimi in the day, while her husband worked, and was even studying for a degree!
The couple were unable to have any quality time to themselves because everything they did revolved around Mimi and her needs. They got so used to their life caring for Mimi, that when they were finally offered support, they weren’t sure they wanted it.
“It was hard for me to even think about carers coming into my home. After 11 years of being her carer, it almost felt like someone was trying to take over,” said Christine.
Mimi would need to sleep in their room, but it was becoming too much both emotionally and physically for Christine and her partner to manage. And when Christine had a few stints in hospital, she realised she needed help.
Christine said, “I think I was almost trying to punish myself for something I didn’t do. I felt guilty and the only way to make me feel better was to care for Mimi 24/7. But I got to a point where I realised as much as I want to be there for her, I also have to have a life of my own too.”
It wasn’t until early 2021 that Christine finally accepted the support for Mimi that they’d always needed. She reached out to a private case management company for help and it became the families turning point. But it wasn’t without its hurdles…
A gradual transition
When Christine finally gave the go ahead, the case management company introduced her to a Clinical Nurse Manager and a Clinical Nurse Educator from Children’s Complex Care.
They knew Christine’s reservations about carers supporting her family, so approached the meeting with empathy and understanding. They worked with Christine to develop a phased care plan to gradually introduce carers and support.
It began with shorter shifts that gave the family time to adjust to having someone else in their home, and gradually increased at a pace that suited them. Throughout this time, the team involved Christine to ensure Mimi’s care was personalised and delivered in a way they preferred.
Christine explained, “At first, I sat through all the shifts and followed them around to keep an eye on them. But the carers chatted to me, asked me questions and didn’t claim to know it all. They involved me and put themselves in my shoes and I appreciated that because it helped me relax.”
Mimi makes progress
Since our team have been supporting Mimi, she’s made huge progress in her cognition and her speech. Our intense support means her complex care needs are no longer a barrier to Mimi’s education and she can focus on school. As a result, Mimi’s become a star student and is constantly coming home with certificates.
Christine said, “Mimi now tries things she wouldn’t have done before because of her disability. And a lot of that is down to the hard work the carers have put in. They help her with school work and have almost become her mentors too. They’re doing a spectacular job.”
Looking to the future
As Mimi continues to progress with the help of our team, Christine is hoping that before her 13th birthday, we can support Mimi to make even more improvements with her speech and help her to be more independent.
The team are working with Mimi, Christine and the rest of the family to review her goals to ensure she can achieve this and so much more, as part of a happy and fulfilling life.
Find out more about complex care
We understand that the concept of complex care at home for your child or young person can feel daunting, especially if it’s something you’ve not had before.