Bronwen’s pregnancy went full term, there were no issues, and the home birth went smoothly. By midday the following day, the mood had dramatically changed. At his 12-hour check baby Jaxon was diagnosed with a Grade 4 brain bleed and his breathing was deteriorating. Living an hour out of town made the trip to NICU a concern for the family.
The relaxed start to life had turned rocky, and surgery was imminent when Jaxon was diagnosed with hydrocephalus. With hospital visits 3 times a week, even for a seasoned community care nurse like Bronwen, life became very surreal. Jaxon started having seizures at 6 months old, he was trialled on a considerable number of medications, and Bronwen and the family were finding it tough. A lobectomy was performed but Bronwen found the lack of positivity and hope, when it came to disability, was debilitating.
Bronwen and Jaxon’s initial exposure to the Champion Centre began in the Baby Programme when Jaxon was 3 months old, and from that moment on, she was showered with genuine hope and delight at all that Jaxon could do. Bronwen states “It was all about celebrating our successes, and the peer support group was as important to me, as therapy was to Jaxon. It was so special to see the kids together and talk to the mums and dads experiencing what I was experiencing”.
The family headed to Auckland for further surgery late 2021 and Bronwen is relieved Jaxon has been ‘seizure free’ for 40 weeks. She adds she was also delighted with the Centre physio, Deborah’s, visit to the ward while Jaxon was recovering. “She was in Auckland on holiday, visiting her daughter and she took time out to check in on us, I was so grateful for that” exclaims Bronwen.
We always want to ensure we meet all our families needs, and Bronwen assures us “Yes, the Champion Centre is amazing, there has never been any judgement, we know you are on our side, it feels like a partnership filled with empowerment and empathy. And the advocacy is just what we need when it all feels a bit much”. She also adds, “Even as a nurse I didn’t know about the Centre, but I do know we wouldn’t be where we are without it”.
Bronwen then goes on to talk about the centre-based approach, after many experiences navigating multiple professionals and providers appointments. “I love that the Centre staff are not telling me different things, it’s obvious that they meet and collaborate and there’s a comforting level of transparency”.
And what does Jaxon love about the Champion Centre? “He enjoys having fun, the physiotherapy, movement has been excellent for us, and we are grateful to have the option of hydrotherapy. Jaxon just loves the music, during lockdown we had access to the remote music sessions as part of our routine, and my 8-year-old daughter always joined in”
“We are optimistic for Jaxon’s future. He has just started talking which is a miracle!”
I love reading the ‘Graduate Stories’ about former Centre children living their best lives”, shares Bronwen.
And finally, she notes, “I don’t even know how we would have got through without the team. The Champion Centre team are an extension of my family and are my support network. They offer me hope, and if you don’t have hope, you don’t have anything”
A big thanks to Bronwen for sharing her time at the Champion Centre with us.
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