Most parents dream about having a healthy new-born baby and picture what life together will be like. For mum-to-be Jin Lin, this is what she’d hoped for. But after a traumatic labour, those hopes quickly turned to worry when she realised her son, Hao Lin, would have complex needs.
With little family support, the new parents began caring for Hao Lin on their own. Until eight years and countless sleepless nights later, the couple asked for help. That’s when they were introduced to our Children’s Complex Care team…
Despite a healthy pregnancy, Jin Lin experienced complications during birth, that caused Hao Lin to suffer significant brain damage – one of the main causes of cerebral palsy. This often affects mobility, can cause Global Development Delay and can also lead to other complex conditions.
Jin Lin, unaware of these complications, was then rocked by the news she received just moments after Hao Lin arrived. She said, “I was expecting a healthy, normal baby, but then the doctors told me he likely had cerebral palsy and would be very poorly in the future.”
“Instantly, I knew his life would be so different to what I had imagined. It was hard to accept that he would be disabled, and I couldn’t help but blame myself.”
Too small and vulnerable to return home, the hospital admitted Hao Lin so they could deliver specialist, round the clock care and monitoring. After several touch and go moments, and months in intensive care, Hao Lin was finally stable enough to leave hospital with his family, who were planning to navigate their unexpected complex care journey on their own.
Managing care needs alone
As Hao Lin began to grow, his needs became more complex and demanding. As well as being unable to walk or talk, he had severe seizures and was eventually diagnosed with epilepsy. On top of this, he had a gastrostomy fitted so he could safely get all the medication, nutrients, and fluids he needed to remain healthy.
Jin Lin remembers, “It was difficult because Hao Lin needs 24/7 care, so I never used to sleep and there was no one to support me. It wasn’t just mental strain, it was physical too, it was draining.”
The parents continued to battle sleepless nights for eight years, with Hao Lin’s beaming smile the only thing keeping them going, as they tried to cope with his daily routine and complex care needs. But eventually, it became too much and just as Covid-19 began, the couple reached out to a case management company for help.
It took time to find a team that could provide the clinical expertise Hao Lin needed and the support the family craved, but it was worth the wait. In August 2022, after a recommendation from the case manager, Clinical Nurse Manager Hannah, from our Children’s Complex Care team, went to visit the family.
“Hannah came over and told me what you could do for us, and I immediately thought, yes – that’s what we need!” said Jin Lin.
Suddenly, everything fell into place, and not long after the initial meeting, we introduced them to Brittany, who would become their first ever Healthcare Assistant.
Adjusting to life with support
Like most parents, Jin Lin found it difficult having support initially. The idea of a stranger in her home made her nervous and she was anxious about someone coming in and taking over. To overcome this, we worked with the family to provide a slow transition period, enabling the parents time to adjust to this new set-up.
Mark Lapuz, the family’s dedicated Clinical Nurse Educator explained, “Jin Lin was really hands on to begin with because everything was new. But slowly, through good communication and shadow shifts, she began delegating tasks to Brittany as she started to gain her trust.”
By week three, Brittany was trusted to help with Hao Lin’s daily routines and care needs. She never took over and never once over-stepped, she just supported them, respecting their boundaries and merging seamlessly into family life.
This approach surprised Jin Lin and instantly made her feel at ease, commenting, “It wasn’t what I expected. I thought they’d be bossy, but they instantly understood and respected me.”
And as for Brittany, she’s firmly part of the family! During the day, she provides the parents with essential respite, supporting Hao Lin with his mobility, personal care and feeding. She’s even involved in his physiotherapy and sensory play sessions, giving the couple a well-deserved break.
Jin Lin couldn’t imagine life without Brittany now, saying with a smile, “I love her! She’s an amazing lady that helps me a lot with Hao Lin. We talk a lot and when she’s here, I don’t worry as much. Before Children’s Complex Care and Brittany’s support, my life was completely dark, but it’s not anymore.”
Making dreams come true!
Once the family were settled with our support, Jin Lin shared some of the dreams she’d had for Hao Lin before he was born. One of these, was a once in a lifetime family holiday – something she thought was impossible because of her son’s complex care needs.
But after discussing it with Brittany and the Children’s Complex Care team, she dared to dream the impossible. She started researching possible locations, leaning on our expertise to finalise the logistics, source accessible travel and find disability-friendly accommodation.
Mark, Clinical Nurse Manager chuckled, saying, “We thought they’d want to keep it close and UK-based, but then they said, Disneyland Paris, and without hesitation, we thought – it’s doable.”
He added, “There’s an impression that if you have complex needs, you’re limited to what you can achieve. But if it’s safe and you have support from the right team, anything is possible!”
It wasn’t long before we were liaising with multi-disciplinary teams to get the ball rolling. We collaborated with Hao Lin’s Occupational Therapist to ensure his equipment would be ready and completed additional risk assessment to ensure everyone involved would be safe.
After months of planning and preparation, Hao Lin, the family and Brittany were ready to jump on the Eurostar for an unforgettable family first! Jin Lin said, “Disney is every kid’s dream and when we arrived, he was so excited. He spotted Mickey Mouse, and I could see the sparkle in his eyes – his whole face lit up!”
With Brittany by their side, Hao Lin was able to experience the magic of Disney worry-free, and the family had and unforgettable time. This will be remembered as their dream holiday come true and has encouraged them to dream even bigger for their next trip!
Since we started supporting the family, they’ve come a long way on their complex care journey. There are brighter, happier days on the horizon.
With our support, Hao Lin has grown in confidence hugely, and he now expresses himself with sounds. Our consistent care has also allowed him to attend school more regularly, where he is excelling in art and enjoying socialising with friends.
And after the success of the last holiday, Jin Lin is busy planning their next adventure, with hopes to visit their extended family in China alongside Brittany. Whatever the future holds for this family, we are excited to play a part in it, and continue helping them make precious memories together.
Find out more
Our Children’s Complex Care team help families like Jin Lin’s to navigate caring for a child with complex care needs. If your child, young person or client would benefit from specialist care at home, get in touch by filling out our quick form.