Sophie’s incredible complex care journey

Sophie recently celebrated a huge milestone birthday. She’s grown up to be a fun and sassy teenager who enjoys musical theatre, listening to pop icons like Cher, and dressing up with her two dogs Barney and Pepper.

However, Sophie’s journey to almost adulthood hasn’t been easy. When she was just six weeks old, her parents, Annette and Neil, noticed issues with her feeding and breathing. Eventually, they discovered Sophie had developed symptoms of Stridor, a rare condition affecting her airways.

Photo of Sophie.

Despite multiple medical visits, she wasn’t getting any better.  With her condition worsening, her parents feared for her future, and urgent action was taken when unusual secretions were spotted coming from Sophie’s nose.

“By the third time I went to the GP, Sophie had saliva coming out of her nose and I knew something wasn’t right…but we didn’t know what it was.” Annette said.

Identifying how serious these symptoms were, Sophie’s doctor immediately sent her to the nearest hospital for testing. It was at that moment Sophie and her family’s lives were turned upside down.

Navigating the unknown

Doctors were still unsure of Sophie’s condition for some time after the initial hospital admission, adding further uncertainty and fear to family life. However it wasn’t long after this, that Annette and Neil learnt the news their beautiful baby girl would need a feeding tube.

Despite the challenges ahead of them, Sophie’s parents remained hopeful and committed to providing the best possible care for their daughter.

But shortly before her first Christmas, six-month-old Sophie returned to the children’s hospital after her feeding tube broke. During a feeding tube change, Sophie suffered a respiratory cardiac arrest and her heart stopped. Within minutes, the doctors rushed to save her life.

“We were ushered out and told to stay in the waiting room. We were there for a good two hours, not knowing what on earth was going on. The experience was awful.” Annette recalled.

After this life-threating event, Annette looked on as Sophie was hooked up to a ventilator to help her breathe. Even though she was in a more stable condition, Sophie’s complex care journey was far from over, and her parents were determined to stay strong to support her every step of the way.

Three photos of Sophie and her mum.

From hospital to hospice

Far from home, Annette and Neil stayed with Sophie at St George’s Hospital in London while she recovered in the paediatric intensive care unit. It was at this point that Sophie required a tracheostomy to enable her to breathe without a ventilator.  

When she was stable enough to leave the hospital, her parents were told Sophie needed palliative care, specialist support for people who have serious or life-threatening illnesses towards the end of their life.

Heartbreakingly, she was referred to a specialist children’s hospice in Guilford with a do not attempt to resuscitate order (DNR). Here, Sophie’s parents made the best of an extremely difficult situation. They made lifelong memories and enjoyed activities like swimming together as a family. They were touched by the kindness and compassion shown by the team at the hospice, who helped create a warm and welcoming environment for Sophie and her family at such a stressful time.

Sophie’s condition means she is more vulnerable to illness and during this time, the family endured another close call after Sophie caught a cold which had devastating effects on her immune system. Her parents were once again told she might not survive…but Sophie wasn’t going to give up that easily. She is a fighter and remarkably, she recovered – stunning medical professionals into reversing her DNR order and allowing Sophie to return home for another chance at life!

Further testing

Flash forward 10 years and Sophie was continuing to fight. She was still extremely poorly and required round-the-clock care for an unknown condition that medical professionals still couldn’t diagnose. But hope was not lost and in 2017, Sophie was enrolled in the Genome project, a groundbreaking project aimed at uncovering the genetic basis of undiagnosed medical conditions.

As part of the project, Sophie underwent further testing conducted by a metabolic professor from Great Ormond Street Hospital. These tests revealed that Sophie was suffering from a rare form of Mitochondrial Disease, a complex condition affecting the body’s ability to produce energy. This diagnosis helped shed light on the underlying cause of Sophie’s mysterious symptoms, helping her and her family prepare for specialist care and support.

Sophie in image with text - "When you have a diagnosis and life expectancy, things are easier. When you don’t, you have to just go with the flow, which is really difficult."  Annette, Sophie’s mum

Supporting complex needs

Throughout Sophie’s life, Annette has had to make significant changes to her routine. This included putting her work and busy lifestyle on hold to focus on caring for Sophie, who needs care 24/7.

While they had been receiving support to care for Sophie from their local NHS team in Surrey, the COVID-19 pandemic disrupted their package of care, and staff shortages across the NHS meant Annette and Neil were often left to pick up missed shifts.

“It was difficult. They were struggling to recruit staff and at night, it was only one person, so it was a lot of responsibility for them in terms of moving and handling. There were a lot of gaps in the day as well when they couldn’t fill the shift. I was also trying to do my nursing degree at the time so there was a lot of pressure.” Annette said.

They found themselves in an overwhelming situation that left them exhausted and in need of a break. But with no new staff coming forward to deliver specialist help, their Surrey NHS team reached out to our Children’s Complex Care (CCC) team for help in December 2022.

A specialist overseas team!

Our Children’s Complex Care team partnered with the Surrey NHS team to address the staffing challenges they were facing in providing care for Sophie. Using our extensive network, we recruited and trained some incredibly compassionate carers from overseas.

With our clinical team’s guidance, the new carers were equipped with the skills and understanding needed to provide the nurse-led care that Sophie required. Through this process, Sophie’s existing Nurse Package was successfully transitioned to a Healthcare Assistant package, ensuring her care needs could continue to be met.

Sophie and her family actively participated in the onboarding process for the new team members, alongside the existing team who had been caring for her for some time. Despite Sophie’s non-verbal communication, the team made sure to include her in the decision-making process, valuing her feedback and perspective throughout the transition. This collaborative approach helped to ensure that Sophie’s voice was heard, and her needs were met effectively.

In the three-month transition process, the teams got to know each other extremely well and when the final handover was delivered, we threw a joint celebratory party – requested by Sophie – to say goodbye to her old Surrey NHS team and to officially welcome her new Children’s Complex Care team.

Person-centred care for Sophie

Sophie and her mum in image with quote - "Children’s Complex Care understood exactly what we need as a family. They knew Sophie needed a care package tailored to her and her needs."  Annette, Sophie’s mum.

Since the final handover, the team have gone above and beyond to bring joy to Sophie and her family! They’ve been superstars, providing support with feeding, moving and handling, oxygen administration, medication and nebulisers.

In addition to their dedicated clinical care, they have organised various activities for Sophie such as theatre trips, pampering sessions, cinema days out, birthday celebrations and karaoke sessions.

Sophie has expressed how she feels comfortable and happy with them. She appreciates that they allow her to choose what activities she wants to participate in and enjoys their company, especially during karaoke sessions.

Sophie commented, “It took time to get to know my new team. They let me choose what I want to do. They are exciting and good at karaoke. They are the best!”

Building a mother-daughter bond

Annette’s journey as both a parent and a carer for Sophie has been challenging.  But with the support of our team, she has been able to become ’mum’ again. By sharing the responsibilities of caring for Sophie, she now has more time to focus on being the loving and attentive mum she always wanted to be. This has improved Annette’s overall wellbeing, allowing her the opportunity to create a more loving bond with Sophie.

“When Sophie was little, it was hard to try and still be mum. It can be difficult for parents with complex children because you can easily be a more of Nurse or carer than a parent. You can easily lose yourself because you’re so busy focusing on the medical side.” said Annette.

She continued, “Thankfully, with the new care team, I would say they’ve helped me to just be a mum. Now every night, Sophie wants me to have something we call ‘Mum chat’, and that is nice to have.”

Going back to work

Annette going back to work has also been a significant milestone in her life. Despite not being part of her original plans, she decided to pursue a nursing degree after caring for Sophie. This decision was made rather spontaneously, with Annette applying for the course just a few months before it started.

Over the past three years, she has dedicated herself to her studies and has successfully completed her degree, becoming a qualified nurse in the process. This achievement marks a new chapter for Annette, as she prepares to enter full-time employment for the first time since Sophie’s birth.

The support of her care team has been vital in helping her balance her caregiving responsibilities with her academic and professional pursuits. “I wouldn’t have been able to complete my degree without the support of the care team.”

Helping Sophie become independent.

Since we began supporting Sophie, she has become more independent. Previously, she relied on her mum for all aspects of her care, but now she attends activities – like a local youth club for young people with complex needs – with the support of her care team. This has allowed her to socialise and engage in typical teenager activities.

The team have also helped Sophie with tasks such as changing and personal care. This empowerment has enabled Sophie to make decisions and communicate her interests effectively. The support provided has not only increased Sophie’s independence but has also improved her overall quality of life by allowing her to participate in activities that bring her joy and fulfilment.

Find out more!

Our Children’s Complex Care team help parents like Annette and Neil 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.

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