Children

Our team of experienced nurses are passionate about creating an at home environment in which children can flourish, leading as independent lives as possible with the same care standards that they could receive in a hospitalised environment.



Case Studies

  • child-1-sm

    Lola’s story

  • shutterstock_148650200 - little girl

    Katie’s story


  • Liam’s story


  • Jacob’s story

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Lola’s story

As told by Lola’s mum

As the mother of Lola, I know that I am biased, but she truly is one of the most beautiful girls in the world. Up until the age of three, Lola was progressing really well, achieving her milestones and was walking, talking and developing as you would expect. She was a bundle of energy, cheekiness and joy for us all. During a family trip overseas just after Lola’s 3rd birthday, we got the first signs that something may be wrong with our perfect little girl. On the day we arrived, after a long plane journey, she had her first seizure.

We had no idea what was happening and hoped that it was due to the long plane journey and dehydration, but within 10 days, whilst we were still away from home, Lola had another seizure and was put on anti-epilepsy medication. When back in England, a number of tests were carried out to try to determine the cause of Lola’s epilepsy. During the course of the following months after her first seizure, we started to notice that Lola was starting to lose other skills that she had once seemed secure in, such as running and walking steadily. This was a time of great uncertainty and stress for the family and Lola, who I am sure was aware of her decline but unable to understand what was happening or how to handle it. Three months before Lola’s fifth birthday, we received the diagnosis that she has late infantile Batten disease.

Batten disease is a group of neurological degenerative diseases that affect children. Of the three most prevalent types, Lola had the variation that typically has an onset of 3 years of age and is signalled by either seizures or loss of sight. The prognosis of this strain of the disease was premature death between the ages of 8-12 years of age. When we got Lola’s diagnosis, she was still able to walk and eat. The day we received the news, I remember collecting Lola from nursery early and finding it difficult to comprehend the idea that the things the doctors said were inevitably going to happen, would truly happen to our beautiful little girl. It seemed inconceivable that she would regress as opposed to progress like other children.

Lola is now 2 months away from her 9th birthday. Over the last 4 years Lola has indeed regressed. She is now unable to move independently or support her body. She is fed through a gastric tube and is unable to talk. Her awareness is limited and she has lost her sight, but despite all this, Lola is still a wonderful, loving little girl. She speaks volumes just through the furrow of her brow or a sigh. She shows recognition of the key people in her life and enjoys being close to them and receiving their warmth.
Over the past two years, the key circle of people in Lola’s life has grown to include her InVent Health carers. Despite changes throughout the two years, Lola has had a core group of carers who have been constant and who have grown to truly know her and care for her. Through their care and attention, they not only administer to her clinical/medical needs, but also nurture her and promote her peace, comfort and enjoyment of life.

As a family, the last few years have been difficult emotionally and practically. Our family has grown and Lola’s needs have changed. Having the carers from InVent Health working with us to care for Lola has greatly helped us as a family to ensure that we can provide the best for Lola during the short time that she is with us. From us as a family, and definitely from Lola, thank you.

 

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The names featuring in all case studies have been changed for client confidentiality reasons.

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Katie’s story

As told by Katie’s InVent Health carer

Bonfire Night 2013 was when life would change for the then two year-old Katie and her family. Following a traumatic road traffic collision, Katie suffered catastrophic and life-threatening injuries of the cervical spine, resulting in 20% brain damage and respiratory failure. After her initial recovery, InVent Health was introduced into Katie’s life.

The foundation for building a successful and sustained care package is communication. A strong relationship, both personally and professionally with Katie’s parents was key in developing a care package that met theirs and Katie’s needs. Katie’s parents wanted to be fully involved in all aspects of her life, so throughout the care process we respect their wishes and needs. Including the family on every level, they are regularly consulted and play an integral part in all decision making, from care plans and staffing to equipment selection and daily care.

Katie needed a team that would meet her specific care needs primarily to keep her alive, but also to motivate, challenge, and act as an advocate for her. Once Katie’s tailor-made team was in place, they began rigorous training initially in hospital, then later in the home environment, tailoring all care to Katie’s specific, complex medical needs.

For Katie, a step discharge process was identified as appropriate. InVent Health worked in conjunction with the hospital discharge team, Katie’s parents, local Clinical Commissioning Groups and community professionals to detail the specific step discharge process and ensure that everyone was working towards the same common goals and aims for Katie’s care.

Katie’s staggered discharge planning involved many calculated phases such as taking her out of hospital for the day, spending a night at her parents’ temporary accommodation near the hospital, and even travelling 200 miles overnight for her Grandma’s surprise party. With precise planning, custom designed equipment and the expertly trained InVent Health staff, this was all made possible and Katie’s goals could be met.

Now, a couple of years on from Katie’s traumatic accident, what was initially perceived as highly unlikely has been achieved, and she is able to receive care from the comfort of her own home. Since returning home, Katie has truly thrived. From a child whose only expression at one point was fear, she is now able to participate in a wide range of play and development activities. Katie continues to develop into the sociable, competitive little girl that she is today, able to enjoy her eye gaze technology computer games and specially adapted bike and electric wheelchair.

Katie has successfully progressed from attending nursery three mornings per week, to attending school for two full days and three half days per week, to now receiving full time education split between a special needs and mainstream school. Recently, Katie’s family were even able to enjoy a family holiday to Disneyland Paris accompanied by her team at InVent Health, which was an anxious event at first, but that anxiety was quickly eradicated via the glow from Katie’s face upon arrival.

Katie continues to thrive on a daily basis, and is a true source of inspiration for all those around her.

 

The names featuring in all case studies have been changed for client confidentiality reasons.

Liam’s story

After a normal pregnancy, Liam was born about six weeks premature at Colchester hospital. As the birth was premature, Liam was placed on a ventilator straight away. Over the course of the next few days, several attempts to remove Liam’s breathing tube were tried, but failed each time, and during this time he had blood gases taken that had poor results. Liam was fine when he was awake and off of the ventilator, but not when asleep.

Liam was transferred to the Rosie wing at Addenbrookes Hospital for specialist treatment, where he started to improve by coming off of the ventilator onto continuous positive airway pressure (CPAP), then to nasal oxygen, then to thriving on his own. The family were transferred back to Colchester hospital so that Liam could have his feeding established. After a couple of weeks his oxygen saturations were fine and he was no longer needing an apnoea mat either. At four weeks old, things were looking good and Liam went home.

After three weeks at home, Liam was found by his grandmother in his car seat looking blue and limp. Luckily, Liam’s grandmother had just received some training at work which meant she was able to resuscitate him, bringing his colour and breathing back. An ambulance was called and after assessing him, Liam was taken to the local hospital. During the ambulance ride he had a bottle as he was hungry and appeared normal. At A&E, Liam collapsed again during an assessment, so was taken to the children’s ward where they tried various treatments including CPAP, but nothing was helping him. It was then that they informed his parents that they had no other choice but to ventilate Liam, but to do this they needed to send him to a London hospital. So Liam was transferred to Great Ormond Street via ambulance.

At Great Ormond Street Hospital, they first queried an infection but after a week of tests they came back clear. Then they thought it could be his heart or muscles, but these tests also came back clear. It was then that a doctor believed it to be Congenital Central Hypoventilation Syndrome (CCHS) or another severe muscle disease. However, they said before the tests that they’d need to perform a tracheostomy on Liam as they cannot keep sedating him for the purpose of ventilation due to Liam pulling the tube from his mouth. After the tracheostomy was performed, Liam was a different child, appearing much happier and even sitting up! Then, the tests came back from Bristol, which is the only testing lab for CCHS, and it was a confirmed diagnosis of CCHS. Now, a treatment plan for Liam could begin.

After 10 months in Great Ormond Street, Liam’s mum was informed that they would be home by Christmas, then March, then June. The time just kept getting longer and longer. Liam’s mum just wanted her little boy at home, so she looked up health providers and heard about InVent Health. She contacted the regional lead nurse and they discussed putting a care package together for Liam. Within three weeks, Liam’s mum’s dream to get her son home had come true. InVent Health carers look after Liam seven nights a week and sometimes in the daytime too. They watch him whilst he is sleeping, keeping him and his airway safe, watching his ventilator and oxygen levels and wait for him to wake up in the mornings with his infectious smile. Liam’s mum wrote, ‘’If it was not for InVent Health we would not be home. Everyone at InVent really chips in and we are well supported by everyone. Thank you to all at InVent.”

 

The names featuring in all case studies have been changed for client confidentiality reasons.

Jacob’s Story

In March 2012, I met and started working with a wonderful family and their amazing new son. This is his story…

Jacob made his first appearance on the 9th February 2011. He was a little early at 34 weeks, and weighed in at 3lb. The decision had been taken for Jacob’s mum Sophie to have a caesarean section as Jacob wasn’t growing very quickly and his heart rate was dropping.

Jacob was diagnosed with Downs syndrome soon after he was born. It also became clear that there was an even more serious issue. It was discovered that Jacob had TOF (trans-oesophageal fistula). In laymans terms, this meant that his airway and stomach were connected and his stomach not connected to his oesophagus As a result there was a danger of any feed finding its way into Jacobs airway, or Jacob;s stomach perforating when he was ventilated. The day after Jacob was born he had surgery to disconnect the two organs. Surgery was also carried out later to put in place a gastrostomy, a feed tube that went directly into his stomach from the outside.

At this time Jacob was requiring lots of medical support but started improving. However, he then had to be moved to Great Ormond Street when he developed problems with his airway, and subsequently needed a tracheostomy and ventilator to help him breathe. Sophie said of this period ‘It was a vertical learning curve. A little like going on a planned foreign holiday but then ending up in a completely different country. A new language to learn, a completely different culture to become familiar with’

Being so far from home for so long also presented its challenges to the family, who had an 18 month old daughter as well.  Sophie spent the majority of the time at the hospital and Matthew, Jacobs Dad, would generally cover the weekends. Fortunately, Matthew and Sophie had a large support network of church, family and friends who helped when they could.

The family received a lot of input and support from the GOSH team and also from the Alex children’s hospital in Brighton where he was transferred whilst preparations were made for him to come home. Progress was being made, a care package with InVent Health was in place, and then Jacob had a respiratory arrest. This changed the requirements of the care package provision, and made everyone involved realise how fragile and complex Jacob was. The decision was taken that the main team looking after Jacob at home would be made up of nurses and / or experienced carers, which meant that there was a delay while suitable staff were recruited.

In late 2011/early 2012, the transition to home care began. Jacobs cot and equipment was set up in the families lounge. I will always remember the tiny little armchairs we sat in overnight! The team grew and InVent Health were soon covering 7 nights a week and some day hours. The families’ capacity to cope with all the changes at home, and have different people in their home all the time, was immense! The number of professionals involved in their life was a struggle at times and both Matthew and Sophie were having to be ‘professional parents’, with hardly any time to be just a family unit. Sophie gave birth to Jacobs little sister in the midst of all this going on, but still the family managed to cope. Eventually it was arranged for InVent Health to provide respite care. 24 hours a month, which the family took bimonthly, enabling them to have a complete break away from the house for whole weekend at a time. Jacob remained at home, with the InVent Health team doubling up and spoiling him rotten!

This was the how the routine carried on; night shifts and day shifts with respite in alternate months. In the 5 years or so that InVent Health was involved with the family, Jacob had approximately 30 hospital admissions, about half planned but also a lot involving an ambulance trip. Over time it became a challenge, almost a celebration, to see how long Jacob could remain at home without having to go into hospital. He eventually became strong enough to not require ventilation at night, and just had oxygen via his trachy tube.

When he turned 3 years old, Jacob started attending pre-school. InVent Health staff accompanied him, but kept a low profile, only giving medical support and feeds. It was agreed with the local authority that he could be kept back a year to enable him to develop and grow some more before school.

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2016 brought its own changes and challenges. As Jacob began ‘big school’. InVent Health were no longer required so were withdrawn.

We as a dedicated team never ‘took over’. We just shouldered a little of the burden of caring for a child with complex care needs for a while. I’d like to think we did a very good job. For me personally it has been an honour to work with such a lovely family and see such a brave little boy face and overcome some major challenges in his life. I wish him and his family the very best as they continue on their journey.

The ‘without whom’s’

A big thank you to the Invent Team. A finer bunch of people, I couldn’t wish to work with!

Conditions

We provide the highest possible standards of care for clients with a range of different injuries and conditions, whilst ensuring their quality of life remains high and they can truly flourish in their daily lives.

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