This is a post that I wrote back in June 2017 for Carers Week. The week we first found out our beloved NHS respite unit, Nascot Lawn, was due to close as a result of HVCCG withdrawing their funding.
Lennon sadly died in August 2017 and I am no longer a Carer – but I was for 10 years, and I would of been for another 10! Despite it being extremely hard work and all consuming, I loved looking after Lennon. My life had a purpose – keeping my son alive and happy, and making sure that he reached his full potential in life.
As a Carer providing 24 hour round the clock care to my son I get paid 37 pence per hour. Yes you read that correctly – 37 pence.
I was once told If we put Lennon into a residential
Placement for 48 weeks of the year it would cost in excess of £200k! (Mainly because his medical care is so complex.)
I have no senior, no union, no one who takes over from me, no back up when I’m ill or my other children need me – it’s just me on own. Don’t get me wrong, Lennon’s dad is amazing, but he has a full time job and he can’t be my safety net.
Nurses get paid a pittance for what they do, but they clock on and off – I don’t. I’m a nurse for 24 hours a day 7 days a week, would that be allowed in any hospital??!
Even when Lennon is in hospital I am still providing him with all the medical care he needs, I don’t get a break as I’m not allowed to leave him alone on the ward in the care of the nursing team as he is too complex. Yet I have no nursing or medical degree or training.
I am responsible for a gastrostomy, jejunostomy, ileostomy, a 24hour feed, making up extra fluids, a ton of medications including controlled drugs and injections, strict fluid input and output measuring and charting and deciding what is a medical emergency and what isn’t. Ordering in and managing supplies from 6 different companies. I have to remember appointments, deal with professionals, fill out untold amount of forms, attend meetings.
I also have to be my child’s eyes, ears and communication aid. He communicates through me.
I have to be on the top of my game always. I cannot take my eye of the ball ever, not for one second.
Is this fair?
He is my son, and it is my duty to care for him whatever his needs are.
I feel carers deserve a little more acknowledgment and respect for what they do, day after day. Most of us give up our whole lives for the person we are caring for.
I gave up my life in order to give my son the life he deserves.
I wish I had kept a diary of Lennon’s Neonatal Intensive Care (NICU) days.
Looking through the many photos through that period of my life, it feels like only yesterday we were on that multi hospital rollercoaster ride, yet in another way it feels like it was the 11 years ago that it very nearly is.
I was a sad person then – devastated that my body was unable to carry my precious baby boy to term. I just about managed 28 weeks of pregnancy. Frightened that my baby wouldn’t survive the awful lifesaving support and treatments he needed to undergo just to give him that small flicker of a chance at life.
I was tired and desperately sad.
Lennon was transferred from the QE2 Hospital in Welwyn Garden City to Chelsea and Westminster when he was just 2 days old. He needed an oscillating ventilator and the nearest unit with one available was Chelsea. The night they moved Lennon I was still recovering from a caesarean section and preeclampsia, the midwives wouldn’t let me travel with Lennon and refused to discharge me. I stood by Lennon’s incubator for hours whilst the specialist transport team prepared to take Lennon on the 1 hour journey. It took them over 8 hours to stabilise him for the journey. At one point they debated whether or not it was safe enough to transfer him at all, and questioned the likelihood of him surviving the journey to Chelsea.
I lay in my hospital bed that night, on a maternity ward full of crying babies and wept. Tears upon tears for the baby I wished were in my arms, the baby I may never see alive again.
Late the next evening I discharged myself, still suffering the effects of the preeclampsia, but desperate to see my baby. I was an emotional mess. Walking out of the hospital with an empty womb and empty arms was the hardest experience of my life up until that point. We found a late night chemist, I needed a breast pump.
It wasn’t supposed to be like this – We were supposed to be walking out of the hospital with our baby, heading home full of happiness and excitement, ready to begin our journey into parenthood.
Ian’s father had travelled to Chelsea and Westminster hospital that afternoon. He waited hours for the nurses to get Lennon stable enough for a visitor. The staff informed Lennon’s grandfather that Lennon was extremely unwell and that they were deeply concerned about his critical condition. He couldn’t get much sicker.
The following day we made it to Chelsea and the plan was for Ian and I to stay there for a few nights, or at least until Lennon’s condition improved. My tiny baby boy looked so poorly. He was covered in wires, tubes, probes and monitors. He looked bigger than the other babies – At his birth weight – 2lb 9oz, Lennon was more than double the weight of most of the other babies on the unit, but was by far the sickest at that point. He needed so much support to stay alive. I now know the reasons behind the high level of support and why he needed all the IV infusions and treatments.
TPN because he couldn’t tolerate any feed into his stomach.
Medicines to bring up his dangerously low blood pressure and blood sugars.
Anti-biotics to rid the sepsis that was taking over his small body.
An oscillating ventilator for his paper thin lungs that couldn’t cope with the ‘normal’ breathing pattern of a conventional ventilator.
Medicine to try to close a large hole in his heart.
Needles into his bladder to attempt to find the reason for his kidney failure.
A light for his Jaundice (a bit like a sunbed – He even had a super cute eye mask!).
A lumbar puncture to check for meningitis
Daily blood transfusions.
The list goes on…..
I was scared. My baby looked so fragile and vulnerable. I wanted to be close to him but he hated being touched, every time anyone put a hand into the incubator he would drop his oxygen saturations and his blood pressure – it felt like he was communicating to us that he just wanted to be left alone. That he was scared we would break him.
I spent endless hours sitting by Lennon’s incubator, listening to the radio that was kept by his bedside, reading his charts and questioning everything that was recorded. Through the clear Perspex wall of the incubator I willed him to stay alive – begged him to stay alive and let me have a chance to be his mummy.
It was December and the run up to Christmas, joy and happiness were everywhere. Lights, decorations, gifts, people on the streets smiling and laughing, the underground full of tipsy workers traveling home from their Christmas celebrations. I wanted the whole world to stop – just like mine had. My sad face and heavy heart didn’t fit in. I didn’t want to be in this limbo. One evening after leaving the hospital I contemplated walking out on the Fulham Road into the path of an oncoming bus. I felt out of control and so low.
Days turned in to weeks and Lennon began to improve very, very slowly. This was the rollercoaster we had been told to expect – Two steps forward, one step back. It was 3 weeks before we held Lennon for the first time – Christmas Eve.
It was all I wanted for Christmas for that year, to be able to hold my baby in my arms. It wasn’t an easy task for the nurses; Lennon was still unstable and attached to so many machines and IV pumps. But they managed it and my much wanted and needed Christmas wish was granted.
6 weeks after Lennon first arrived at Chelsea and Westminster he was taken off the ventilator and was now dependant on CPAP to aid his own breathing. He still needed a fair amount of IV support, but seemed to be tolerating small feeds into a Nasal Gastric (NG) tube. And so we were transferred back to Lister Hospitals NICU in Stevenage, much closer to home. We were over the moon – One step closer to home! Shorter journeys to the hospital also meant I could spend much more time with Lennon, and the visiting hours at Lister were much less strict than they were at Chelsea.
Lennon spent the following 6 weeks dependant on CPAP. We were able to hold him most days, he had his first bath, and despite Lennon still being in an incubator because he was unable to support his own temperature, we were encouraged to get him dressed every day.
By the time Lennon had reached his due date – 27th February 2007, he was in the Special Care room and only needed nasal cannula oxygen to help with his breathing. He was prescribed an array of medication, and although he still needed his NG tube he taking a small amount of feed orally. He occasionally would stop breathing and needed to be resuscitated. It was scary, but it was nothing we hadn’t gotten used to seeing over the last couple of months. Things were looking up and home had been discussed a few times. Both Ian and I were understandably delighted by the slightest mention of bringing Lennon home, although at the same time nervous about caring for an oxygen dependant baby needing tube feeds. And the thought of him stopping breathing at home petrified me, but I really wanted my baby at home, where he belonged.
Unfortunately this wasn’t to be. Lennon had other ideas – his breathing deteriorated quite rapidly over the course of a few days, until he needed to be intubated and ventilated again. That day will stay with me forever. I relive that day many times in my head, repaying the scenario minute by minute.
The Doctor reviewing Lennon and transferring him back into the NICU room.
The look on all the nurses’ faces and the tears in their eyes.
The mum that took me out of the room to call Ian and tell him to get there as quickly as he could.
Being led to the ‘bad news’ room and sitting in silence, alone, waiting for someone to tell me my baby hadn’t made it this time.
Ian arriving, crying on my shoulder.
Being led back to Lennon and asking if the nurse if he was going die and her replying that she couldn’t answer me.
Drinking copious amounts of sugary tea…..
No one could find a reason why Lennon had suddenly become ventilator dependant again. All sorts of doctors visited to NICU to review him. They suspected Lennon had chronic renal failure and an endocrine issue but nothing that would hinder his ability to breathe unaided. They even called in an adult cardiac doctor who carried out extensive test – they all came back normal. I was devastated. We had tumbled so far backwards. I returned to sitting helpless at Lennon’s bed side. I read him stories and learnt to crochet to help pass the time.
Winter turned to spring and we were still in NICU at Lister holding a bedside vigil, whilst waiting for a bed to become available on the Intensive Care unit at Great Ormond St Hospital (GOS). It was decided they were only people who could get to the bottom of why Lennon could not be parted from a ventilator. It took 5 weeks for that day to arrive. I’ll never forget the transport team turning up, and not quiet believing that the day had finally arrived.
Lennon looked so big inside the transport incubator.
As soon as Lennon had arrived at GOS they began their extensive tests. It didn’t take long for them to diagnose Lennon with Chronic Renal failure – he had 1 cystic kidney and a small ball of cysts where the other should have sat. They also diagnosed him with pan hypopituitarism – his little body was not producing thyroxine, or growth hormone and they suspected that his adrenal glands were also dysfunctional. The most significant finding was in Lennon’s heart – His PDA (the shunt that snaps closed when a baby is born) was gapping open. The cardiac surgeon had said it was one of the biggest he had ever seen.
Once Lennon had undergone cardiac surgery he was taken off the ventilator. And after a 2 week stay at GOS Lennon was discharged back to Lister and into a cot for the first time! I couldn’t have been happier – my little soldier had cheated death yet again and maybe this time we were coming to the end of our Special care journey.
We prepared for Lennon to come home with us.
For us to finally be his Mummy and Daddy.
For us to be able look after him and make all the decisions.
We had resuscitation training and our house was fitted with home oxygen. We collected a prescription of special milk and a ton of medication. We borrowed saturation and apnea monitors, blood pressure and suction machines from the hospital. Our small flat was over taken with medical supplies. I was scared, but above all so very excited to bring our son home for the first time. At various points over the 6 months I doubted this day would ever come. I always thought Lennon was not destined to come home, go to school, or grow up. I could never picture at home – no matter how hard I tried.
We were allowed to take Lennon off the ward for small amounts of time to get used to looking after him without the support of the amazing nurses that we had come to rely on over the last 6 months. We spent a night in a bedroom on the ward the night before we brought Lennon home.
Neither of us slept.
I spent the whole night either holding Lennon or staring at him. Disbelieving the day had finally arrived.
On 24th May 2007, after 6 months, we walked out of the Special Baby Care unit. I carried Lennon in his car seat, with an oxygen cylinder on my back. Down the very corridor I had spent the last few months walking up down, watching mothers leaving the delivery suite holding their babies. Those mothers haunted me – all I wanted was to walk out of the hospital holding my baby. Finally it was my turn.
Our Special Care community nurse followed us home. She stayed with us until we had settled in and felt confident enough for her to leave.
I was ecstatic!
Poor Lennon was moved about like a doll. I placed him in his Moses basket, into the swing we had brought him months earlier. I cuddled him, stared at him – Almost trying to make up for the last 6 months. I still could not believe that my precious baby boy had survived and was finally well enough to come home with us.
That night before we went to bed, I gave Lennon his medications before his last feed of the day.
He went blue and floppy in my arms.
I called for Ian, Lennon had stopped breathing.
He still had a pulse.
I laid him onto our bedroom floor and started CPR whilst Ian rang an ambulance.
My adrenaline kicked in and I knew what I had to do – I didn’t even have to think about it. By the time the ambulance had arrived Lennon was breathing again. I had saved his life. Thank goodness for the CPR training I had done before leaving hospital.
I felt numb.
Lennon ended up back in hospital that night, and a new journey began. 6 months in Special Care for not even 24 hours at home.
So much happened over those 6 months, and I learnt so much. I learnt that things aren’t always as they seem. I learnt the meaning behind the saying ‘The best laid plans of mice and men often go awry’ – no matter how much we or anyone else planned, the potential for something to go against that plan was always there. Lennon often wrote his own rule book!
The biggest lesson I learnt from being in NICU was patience – I never had any before Lennon was born. I struggled to wait for anything.
Patience was the main ingredient I needed to help me get through the 10 years that followed.
He was first referred to NHS Nascot Lawn when he was 2 years old. At that time he had a Hickman line for TPN and fluids, 24 hour oxygen and a Peg-J tube for a 24 hour feed. After a few months of ‘tea visits’ the staff, Ian and I, all made the decision that respite at NHS Nascot Lawn would not work due to Lennon’s complex medical need – he was too medical complex even for NHS Nascot Lawn.
5 years ago, our family was in crisis. We could not cope with the gruelling medical routine Lennon needed in order to stay alive. We had Isla and I was pregnant with Florence. We were providing hourly medical care throughout the day and 2 hourly medical care throughout the night, with no break. We had a continuing care package but Isla was unable to sleep with a night nurse in the house, and after a year of trying this we had to stop – we were not up providing medical care for Lennon on those nights, but we were up most of the night with a frightened toddler awake and crying.
Lennon was deemed by Great Ormond Street Hospital (GOS) as one of the most medically complex children in the country. He was under 16 of the hospitals specialist teams. He was a frequent flyer to 4 of the wards at GOS. During a recent stay on one of those wards I was asked not to leave the ward as the nursing team were unable to provide Lennon with his complex medical care alongside his behavioural need. You see, Lennon was not only very medically fragile; he was severally autistic and had profound and multiple learning disabilities (PMLD). He was deaf blind, had very little communication (unless you knew him well) and absolutely no sense of danger. He was disabled, but very able bodied at the same time. His Occupational Therapist has never come across a child like him.
Once we had been referred back to NHS Nascot Lawn, and had a care package agreed by a panel we began the process of ‘tea visits’ and compiling care plans. This took 9 months. 9 months of qualified nurses training and becoming competent in being able to carry out my sons medical needs. 9 months of writing and re writing care plans. 9 months of preparation before Lennon was able to stay just one night at NHS Nascot Lawn.
We are a family from East and North Hertfordshire. NHS Nascot Lawn is the furthest respite provision in the county from our home and Lennon’s severe learning disability (SLD) school. 2 of the 3 county council commissioned respite facilities are fairly close to our home, and even closer to Lennon’s school, but neither were in any position to be able to accept Lennon and the high level of nursing input needed to keep him alive every day. He needed nursing care to be able to attend school, he needed nursing care to be able to live with his family at home, and therefor to be able to access respite care he also needed nursing care – Hence our need for NHS Nascot Lawn.
NHS Nascot Lawn was a lifeline for my family – and I do not use that word lightly.
Providing medical care to your own child for 24 hours a day, 7 days a week is gruelling – Both emotionally and physically. Getting up every 2 hours throughout the night, every single night is exhausting. You cannot roll over in bed and make a decision to ‘skip’ getting up tonight because you simply don’t have the energy. You have to drag yourself out of bed, force your legs to carry you to your son’s downstairs bedroom and wake up enough to be competent in carrying out the procedures he needs in order to make it through to the next morning. Life or death is a huge responsibility for any parent to have to deal with. No one would expect a nurse in a hospital to work the hour’s parents do, or take on the responsibility that parents take on when they are caring for medically complex child. And I haven’t even covered the effect that all of this had on my other children. They also needed their Mum and Dad’s time and affection. My 9 and 4 year girls often got up in the mornings, made their own breakfasts and packed lunches and got themselves washed and dressed.
Not only did NHS Nascot Lawn give Lennon an opportunity to have sleepovers and to spend time with children like him out of school, it also provided respite to our whole family. Time for Ian and I to catch up on well needed sleep, housework, and paperwork. It enabled us to spend quality time with each other, and with Isla and Florence. We lived like a ‘normal’ family for one weekend a month (my 9 years old phrase). We could go on holiday (holidays with Lennon were near on impossible, and travelling abroad was a no go as my sons medical team at GOS had advised us not to leave the country without a medical practitioner) and have fun days out at theme parks and the seaside. We could go out for meals, pop to the shops and stay overnight with friends and family. Things that other families take for granted every day.
After receiving the letter back in June informing us of the impending closure of NHS Nascot Lawn due to Herts Valley CCG’s (HVCCG) decision to withdraw funding, we were visited by the East and North Herts (ENH) Commissioner responsible for my sons care package. She had been researching respite options for Lennon. Only one option seemed viable at that time – Helen and Douglas House, Oxford. A 4 hour round trip from our home and Lennon’s SLD School. The ENH commissioner (and various other medical practitioners) had informed us that respite at the County Council commissioned facilities would not be an option, due to them having no qualified nursing input – despite HVCCG stating that all children with complex medical needs could be safely cared for in these units. To our family, Lennon’s medical team at GOS and Lennon’s health, this was not a safe option. Potential transfer to a hospital who did not know him and his individual medical complexities, a 2 hour journey for us to get to him if he became unstable and needed to be transferred to a hospital and a 2 hour journey for a child who requires hourly medical input takes an awful lot of forward planning. This then left us with no option for respite other than NHS Nascot Lawn. We were then faced with the impeding reality of being solely responsible for a child requiring an extreme level of medical input, with no overnight respite for the indefinite future. No break, no sleep, no time for our other children. To us, it seemed that the most vulnerable children and families in the county were being set adrift.
We were later advised to consider looking into a 38 week a year residential placement for Lennon – potentially costing the NHS in excess of £200,000 per year. All because we could not access 3 nights respite every month. This seemed extreme, not least because we wanted Lennon to live at home, with his family like every other 10 year old, but because it made no sense financially.
Lennon then died suddenly.
We knew him living into adulthood was unlikely and that every day he was alive was a miracle. We knew we could not keep him alive forever, no matter how hard we tried. The life of a medically complex child is fragile. They balance on a line between life and death.
Lennon is one of two NHS Nascot Lawn children that have died.
Lennon was not the only medically complex child living in Hertfordshire, he was not the first, and he will not be the last. There are, and will be in the future, more medically complex children surviving – Children whose families will need the help of a nursing care respite unit in order to carry on caring for their children at home.
Advancements in medicine mean children who would not of survived 10 or 20 years ago, are now surviving – But at a cost. These children will need medical input; and some will need the same amount of high dependency care that Lennon required in order to stay alive. What will happen when these families need respite? Where will they go? Or will they also be encouraged to look into residential care for their children?
When the NHS was launched in 1948, its values were based on 3 core principles –
That it meets the needs of everyone,
That it be free at the point of delivery
That it be based on clinical need, not ability to pay.
To my knowledge, these 3 values still apply today.
And the NHS still aspires to put patients at the heart of everything it does.