I became a carer for my son after a routine surgery left him with brain damage

Finding out I was pregnant was one of the best things that ever happened to me.

Though I’d had a difficult upbringing and grew up in a succession of care homes and foster families, there was no way my child was ever going to feel unwanted or unloved.

My son Elijah was born on 24 March 2006 with Apert Syndrome. Simply put, Apert Syndrome is a rare condition characterised by anomalies of the skull, face, and limbs.

Gene mutations are responsible for causing the early fusion of the skull, hand and feet bones and surgery is often required to correct the skull so the brain can develop. There can also be a host of other complications that can affect the airways, eyes, heart, and abdomen.

Having Apert Syndrome myself, I knew there would be challenges ahead. Because of my lack of manual dexterity, I knew I would struggle with parts of my son’s day-to-day caring needs, such as changing nappies, fastening clothing and bathing.

When I communicated this to social care, they initially wanted to give me equipment, but what I needed was a human being to help me with those things, which I eventually got.

I also knew that Elijah would face some challenges, because of his narrow airways he had problems feeding and breathing at the same time, so had to be monitored. Further along I knew he would have to have surgeries as I did.

But all of this was manageable — and when I first set eyes on him, I was overcome with so much love and emotion that I spent the whole day just staring at him.

In many ways Elijah was a healthy boy. For a year, things were normal. Elijah went to nursery, I worked as a receptionist for St Basils, a homeless charity, and he was well, had a good appetite, laughed, played, and loved music.

Then in October 2007, he had a routine surgery to expand his skull so that his brain could develop, a common procedure for those with Apert Syndrome.

This required Elijah to have several cranial distractors inserted in his skull, which had to be turned over a period of weeks. The surgery in itself was effective, but because of an undiagnosed infection at the site of one of the distractors, he suffered catastrophic brain damage.

Our lives changed forever.

I was heartbroken and spent much of that first week in shock. I went from having a ‘normal’ child, to a child who was motionless and needed round the clock care. He could not eat orally anymore and was fed liquids through a tube. He was unable to communicate or move and was doubly incontinent. 

This was when my life began as a carer.

For many of us, caring for a loved one who needs support is not only a full-time job, but also our life. I have become so skilled and knowledgeable in my role that I now consider myself a professional.

The only difference is, I don’t get paid for it.

Over Elijah’s 16 years, I have been the one constant in his life. While Elijah has a support team of 15 carers and registered nurses, I often bridge the gap in communication between healthcare professionals and social care, knowing more of his personal history and condition than they do.

Our home is full of people 24/7. I not only manage the care team, I organise training, and recruit and interview new staff to employ.

I have taken multitasking to a whole other level!

At the same time, carers face so many challenges. Over the years I have experienced overwhelm, stress, fatigue, anxiety, depression, and the frustration of not being listened to.

Nothing is straightforward. Often you have to work out yourself how to navigate the system as you go along.

At times it feels like I’m on a hamster wheel. There is no point where you put your baby into bed and then put your feet up with a glass of wine. You are ‘on’ 24/7. They don’t grow up and get more independent, their needs just become more complex.

It’s impacted me physically and my health has deteriorated over the years. Stress and exhaustion have affected my mental health, I have developed arthritis in my right hip, and am stiffer as a result. There are so many more pressures as a carer, there is never any let up.

Then there are the compromises we make in life. Sacrificing intimate relationships, friendships, and careers.

 Being employed would never have worked for me because Elijah’s health is so unpredictable. If he was rushed to hospital, I would have to be there – sometimes for weeks. I’m even writing this now while in hospital on just one of our many visits so far this year.

One in eight adults in the UK are unpaid carers saving the economy an estimated £132billion per year. That equates to £19,336 per carer. Yet we are, for the most part, invisible, and don’t get the recognition of contributing to society that we deserve.

 But it does not need to be this way. For the most part, all carers want is to be respected and have clear, concise, transparent communication from professionals we liaise with.

 We get on with taking care of our loved ones, day in, day out, often putting our lives, careers, and other relationships on hold.

Many carers speak of isolation, and although we have a large team to cater for Elijah’s needs, I still feel this every day.

I have learnt the hard way the importance of making time for myself to ensure my health and wellbeing is also a priority. There was a time that I was so burnt out and exhausted, I wasn’t sure if I wanted to live any more.

Elijah has around 70 professionals in his life, whom I have to communicate and coordinate with. I have learnt how to do this effectively but at the beginning it was frustrating.

As the ‘parent’ rather than the professional, I was not given the information I needed. I would have to shout to be heard.

In some ways it’s happening again as Elijah transitions from child to adult health and social care. There is no professional who oversees the transition to adult services. I have to manage all of it and call everyone up and work it all out myself. I also find the professionals do not talk to each other; us carers often bridge that gap in communication.

 I am not asking for a salary, although everything helps!

Instead, I would like carers to be valued and invested in. For instance, I manage a large care team and I was getting very emotional, which of course affected those around me and their ability to do their jobs effectively. I realised I needed a coach to help me manage everything I was going through. It was going to cost £250 a month, I asked social care if they could pay it and the response was a straight NO!

I found the money, but it would have been wonderful if they had recognised the value in everything I already do.

Aside from that, we need to start taking our health seriously. Caring puts a real strain on our physical and mental health, and family relationships. Sadly, everything costs and carers just don’t have the resources.

Having care packages for carers to use as they choose would be an amazing resource. I would love to see the government make a substantial investment in health and wellness for carers, whether that’s some kind of therapy, coaching or other wellness support.

This is one of the reasons I set up the Carers Collective – a coaching programme for carers who are struggling; giving them time for them to take care of their own mental wellbeing so they can better support those they care for.

Just being able to talk to someone openly and honestly who’s outside of the situation allows carers to be vulnerable without fearing judgement or criticism.  

I can safely say that it has made me a better manager and person. And it’s made me realise the importance of prioritising myself and my own needs, too. 

I want carers to be properly recognised and supported in what they do.

I support the recent Carers Week campaign to have more funding and resources that carers can access to support their health and wellbeing and clear signposting as to how to access these things. What that looks like I don’t know, perhaps a one-stop-shop where carers can go and find out all their entitlements and what’s on offer and how to access them.

Becoming a carer shakes up your whole life – there is often not the time to think about you. This needs to change.

You can find out more about Kaddy and Elijah here

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