New Year

Happy New Year to you all. May this year bring you much love, good health and happiness. I’m especially thinking about all those I know who are struggling with ill health, hardship or loss. They are painful journeys, but I hope 2019 will give you some light and hope. 

I will be walking in to 2019 without two very important people beside me. They were two of the most loved people in my life. They fought hard; they made a huge difference to many people’s lives; and they have made me the person I am. 

I started walking this path six years ago when I lost my much wanted and much loved son, Isaac. 

This particular path has been rocky, enduring and full of twists and turns. At times, my feet have dragged. I’ve stumbled. I’ve fallen. I’ve been stopped in my tracks, many times. Why go on when the one person you want to share your journey with isn’t there? It’s been lonely and dark too, especially at the beginning. I was blinded by grief for a long time. I pushed people away. I didn’t want anyone else beside me. It felt like it would be easier just to stop rather than to carry on and take a step forward.

But I’ve found the strength to some how keep plodding along. At times I’ve seen light ahead of me. I’ve had help and support from people who’ve carried me on and led the way. They have been the light that has guided me through those dark days. They are my husband; my friends; my family; my doctors; my counsellors; my mum. And when they couldn’t help, I’ve resorted to using crutches at times to get me over a few bumps in the road. For a long time I refused these crutches, but eventually I accepted they’ve been needed, finally. 

There’s even been moments of hope; the most important was when a rainbow appeared. Bright and beautiful, this aurora of colour has made the steps a little less painful and taught me to feel happiness again. Even when the sky is foggy and grey, this rainbow full of love and hope has been my salvation with it’s rays of colour shining through; leading me in the right direction. I owe this rainbow so much. 

I’ve accepted that this particular path will never end and I will have to continue the journey along it forever. However, as I keep going I have found that there are now moments of happiness, exciting adventures and lots of smiles, despite what the path became six years ago.  And when this path comes to an end, Isaac will be there too. 

However, this year I’ve lost my most important guide along the way. The woman who has picked me up and held my hand many, many times. The woman who I turned to whenever I grew tired and weary. The woman who taught me to walk the path I’ve been given head on and keep going, no matter what. My mum. 

There are so many times I have wanted to reach out to her when i didn’t  know where to turn. I miss her telling me it’s all going to be okay, then pointing me in a clear direction. Mum was like my moral compass. She helped me learn to navigate my world and educated me in the right turns to make. 

Mum is not here to help me finish this journey but I still hear her in all I do. I know that everything she taught me will lead me where I need to go.  And I know she’s gone ahead to look after my boy. 

So, I will walk tall in to 2019. I will continue to navigate through this journey I’ve been given, with it’s highs and very sad lows. And I will hold on to the rainbow, the light and the hope that I rely on to guide me in the right direction. 

Whatever journey you are on, I wish you all a year that sees you finding light and hope where ever you can. And a year where you have the support and love of others to guide you through the good and not so good times.  

Happy New Year. ❤️

Captured

Since I’ve had my daughter I’ve been obsessed with taking photos. Every new outfit she wears requires a photo. Every time she does something for the first time, I need a photo of that. There are moments where I see her taking pleasure in little things like blowing bubbles in the garden, or playing at being a doctor with stuffed teddies- that needs a photo too. In fact, I have over 5000 photos of my daughter on my phone alone! I try to pass off the photo taking as a hobby, but really I know it’s bordering obsession. The walls in my house are slowly becoming a patchwork of memories. Inches of wall space are ordained with these priceless images I take of her. No need to worry about painting and decorating as you can barely see the hall way walls! I’m clearly a show off. I created this little miracle, and damn it, she’s mine to be proud of!

But the real truth is behind the camera phone there is a mother who’s terrified. Im a mother who wants to make sure she will remember every moment she has with her little girl. Im a mother who wants to capture every memory ‘just in case’. The threat of the unexpected; the fear of uncertainty; and the anxiety of the unknown permanently chips away at any optimism I have on any given day. This is how a mother who has lost a child behaves.

I don’t remember seeing Isaac for the first time. In fact, I think about 20 others, mainly doctors and nurses, saw him before I did. I wasn’t even conscious when he was born! I was fighting for my life like he was. We were both unaware of the trauma going on around us. I look back on that day and I feel cheated. It shouldn’t have been that way, and we have evidence of that now. Not only was I cheated out of that first unforgettable glimpse of my baby, but I actually don’t really remember what I saw when I eventually did lay eyes on Isaac. I was coming round from a general anaesthetic and heavily medicated. I had lost a lot of blood and I was in pain. All I remember seeing were wires. Lots of wires. I have no memory of his face, his hands, his tiny body. Just wires. The only reason I know he had fair hair and was perfectly formed was because of a photo I have of that moment. It’s a real memory that I can’t remember happening. And it was the start of my obsession with photos.

On the day Isaac was born he was taken away from me. I was left in that god forsaken hospital alone whilst he was being transferred to his final home at St.Thomas’. I didn’t understand what was happening. All around me strange, peculiar things you don’t expect to happen in a hospital were happening. Nurses were telling me they were praying for Isaac. Consultants were crying. Darren’s mum and brother suddenly appeared out of no where. My mum was being strangely quiet when normally she would take charge of any silliness like this. It all seemed nonsensical. I don’t remember having or seeing my son but I was told he was very unwell and now being transferred. I believe I was told this at least two times every five minutes. I was still confused and still quite heavily sedated. I question whether that was for pain management or to ‘manage’ me now. However, I was desperate to see him. I called Darren and he sent me the photo that was taken of me seeing him for the first time. I saw his face for the first time properly. He existed beneath those wires. He was real. I needed to get out of that hospital and be with him.

After eventually securing my escape nearly two days later, i was transferred to St.Thomas’ to be with Isaac. I saw my son properly in the flesh. Shock and horror set in as I reeled at NASA-like machinery and endless lines and tubes surrounding him. Underneath all that futuristic technology lay my baby dressed in his brain cooling suit, reminiscent of an astronaut ready for flight. Ironic really, seeing as he wasn’t much longer for this world. Looking past this macabre space age scene, his tiny body looked almost lifeless; his expression suspended. But I could see he was beautiful. I could see the fair hair and perfectly formed features. This was the first time I really saw my baby. And of course, I captured it on film. The photo of my first real sight of Isaac is now a canvas on my dining room wall.

With Isaac’s life hanging in the balance, I sat beside him wordless and in a daze. I rarely moved from that spot by his cot for the remaining four days I had with him. I had already lost two days with him whilst being held hostage in that other hospital, begging to be taken to St.Thomas’ who had already secured me a bed. I wasn’t going to sacrifice more time for pointless things like my own obs, or food, or sleep. I knew the reality: he wasn’t going to be with us for long. Beside me the whole time was Darren, and my phone. So, i took photos every time the nurses did something like change his nappy. I took photos of him when he had his hand held by Darren or other family members. I even took photos of him from different angles of the cot! Anything and everything just so I could keep that memory alive forever. I couldn’t forget. I wouldn’t forget.

We even have christening photos. He was four days old when we were told we should arrange a christening with the hospital chaplain, Mia, ‘just in case’. There are no smiles, fancy clothes or pretty church. Instead my son became part of God’s family in a intensive care ward with his mother in pjs and his father unshaven. All of this is etched in photos by the nurses: the divine moments of a celestial boy’s baptism. Another, ‘just in case’ moment captured to memory.

And then there’s the photo where Isaac clasped my fingers. It is my most treasured image of all. It’s full of life. It shows he lived. He was my earthly baby for a while. I look at that photo and I remember his little hand; the pressure of him squeezing my fingers and the hope it gave. There is nothing quite like your baby squeezing your fingers. It’s like they are silently telling you they are yours. They belong to you. Isaac was my baby. He knew I was his mummy. I have the evidence. I know he knew.

The real reason for my obsession with photos? Fear. If I can commit it to photo and it’s then taken away from me I still know it existed. If the worst happens I have an image of those happier times forever, even when my own memory fades. It is real. It happened. I have proof. Isaac was real. He was a fair haired baby, perfectly formed who loved his mummy and daddy. I have proof.

I now take beautiful shots of my daughter and feel proud. I’m proud of the little person she is and I want to show her off. But there is a tiny part of me that does it from fear. Fear of her leaving me too. I hate the fear. I despise it. I despise myself sometimes for even thinking that way. But my anxiety cannot always be tamed. My fear cannot be totally pacified. When the the worst has happened to you, the worry is always there, lurking in all you do. You see, I can take every precaution I can to keep my daughter safe. I can play the odds, take out insurance and plan for eventualities. But I can’t predict the future. I can’t keep what could happen at bay. Life may be wonderful for us in the future. It may not- and that’s the fear speaking- but at least I can keep my memories forever. I can take a photo of moments to be proud of; times we are happy; achievements and small joys. They may make me smile. They make me cry. But they are mine, always.

Simone

How Life Changes

So today Isaac would be celebrating his 6^th birthday if he was here with us. People say that it gets easier, time is a healer…but the reality is very different. Life does go on, but as major events happen in your life, you are constantly reminded and thinking of how different life should be.

Isaac should be about to finish his second year at primary school. He should be preparing to be the big brother looking after his little sister who would be starting at the same school in September. Starting to learn musical instruments, getting more involved with sports – and in my ideal world desperately wanting the Wolves team strip as they embark on their first season back in the Premier league, with Neves written on the back if he didn’t want “Smith”.  I’m sure he would have mastered the dab, be showing us all how to floss and generally growing in to the special little boy that we all know him as being.

It’s fair to say this past year has been incredibly challenging for us. In April, Simone’s Mum passed away, after a hard fought battle with cancer, and losing her has understandably affected us all greatly. She was Simone’s absolute rock and Isla thought the world of her. Her death has affected us all in different ways, and explaining to Isla naturally brought up a lot of thoughts about Isaac as well. We’ve always ensured Isla knew all about her very special big brother. She’s always known that he is up in the sky looking over us all, and over the years it’s shocked us, brought tears, but also brought very special moments that she knows and is happy to talk about her big brother being up in the sky.

Isla often will now talk of him, and that he is up there with Nanny, and also with my Dad who obviously she never got to meet, but has seen pictures of. And it’s not just with us that she talks – we quite often hear how she has been in a contemplative mood at nursery and has spoken with Denisha and Gizem (her teachers at nursery) about how both Isaac and Nanny are up in the sky, can see what we are doing, and are in the stars.

But despite Isla’s understanding of where Isaac is, it doesn’t make it any easier. In fact, as she grows in to the most amazing little girl, it hurts even more that she doesn’t have Isaac here to play with her, to look after her. We see her friends with their brothers and sisters and it is incredibly heart-breaking that Isaac isn’t here growing up with Isla and loving her as much as she loves him.

And this really brings us on to the other main news of this past year. Whilst understandably not as heart-breaking as the death of Simone’s Mum, it has been an incredibly difficult subject that has lived with us over these past 6 years. After 5 and a half years of frankly torture, we settled out of Court with North Middlesex Hospital over Isaac's death. It’s taken us all of this time to finally receive the only thing that we wanted – an apology that the actions of the hospital and the staff at his birth had resulted in Isaac’s death 6 days later.

I feel it’s necessary to go into a bit of details on what has been happening over these years and the impact and difficulties it has caused us – after all, one of the purposes of our page and our blog is to break the taboo’s and give an insight in to what it is like for a family to lose a child. In the days that followed Isaac’s death we were made aware by Isaac’s consultant at St Thomas’s that after reviewing the timeline of events – something wasn’t adding up. Something wasn’t right and that it needed to be investigated. As you can imagine, at the time, and in the months that followed Simone and I were struggling to come to terms with the fact Isaac, who we had longed for for so long was not here with us. So to add to that the fact that, what we thought had been a tragic situation at his birth may have issues that could possibly have been prevented was incredibly hard for us to take.

In the months that followed we met with the team at North Middlesex and it’s fair to say we were led a merry dance – initially being told one thing – such as there wasn’t a procedure at the hospital for dealing with a major bleed, to being told the complete opposite. Eventually a year after Isaac had died and after sending a very aggressively worded letter to the hospital and copying in such groups as the Royal Society of Midwives, the board of North Middlesex agreed to meet and in the coming months we had a number of very difficult meetings. Those meetings were to do two things – to get to the bottom of what happened, and also to try to ensure that this would never happen again to another family. What was evident at these meetings – the hospital knew that things hadn’t been done correctly – but their standard view all along was that Simone had had a placenta abruption, and that Isaac was therefore going to die anyway in the circumstances.

Roughly a year after Isaac died, with the help of Sands, we appointed a solicitor and started down the road of a medical negligence case against North Middlesex. We were advised at the time that it would be difficult, and painful, but I don’t think for one second we realised quite how difficult it would be.

Over the coming two years we would get updates every few months – as different expert witnesses were appointed to give their view. With each one, a report was written, and tears were shed – an expert Midwife, an expert Obstetrician, an expert Paediatrician, and then finally we had to meet with a Clinical Psychologist to see what impact the actions and death of Isaac had had on us. It was incredibly difficult to go through, and relive what happened at Isaac’s birth over and over again.

Once our solicitors had compiled all of their information for the case it was then sent to the North Middlesex team and roughly four years after Isaac’s death we were asked to meet with their expert Clinical Psychologist to see what his view was of how we had been impacted. It was constant, it was hard, and we were put in a position where we had no choice but to relive it over and over again.

Eventually, North Middlesex Hospital accepted that they had been medically negligent, but that doesn’t end the case, as it is then down to seeing if they will pay the costs that we had incurred – Isaac’s grave, the cost of the ongoing counselling, the cost of specialist counselling to help us get through what can only be described as an impossible set of circumstances to live with, and most importantly to us - a letter of apology.

It took until earlier this year, with the possibility of going to court looking very likely, before finally North Middlesex came to agreement and issued a full letter of apology. Along the way we had previously received a letter that was seen as appropriate by them which stated that they were sorry for the shortcomings in their treatment of Isaac – but to us this was just a kick in the teeth – we wanted an apology for the actions of the hospital that caused the death of our beautiful little boy.

Eventually that was received, but not without legal sacrifices – we had to concede that I was not a victim in the medical negligence of Isaac’s death – because he had survived for 6 days – and through ‘dawning conscious’ we apparently should have got used to the idea that Isaac was going to die and as a result not suffered any form of post-traumatic stress. If it wasn’t for the fact that it had been Simone’s body that they were negligent to, we would also have had to concede that she was not a victim as well.  I think it’s fair to say, that this alone shows that despite all the improvements that are happening surrounding support for parents losing a child, or dealing with miscarriage, there is still a long way to go – for courts to use the concept of a car crash (one shock incident) as to whether we should suffer Post Traumatic Stress or not when our son fought so hard for 6 days to spend time with us – showing us his strength, his determination, his love…….it’s heart-breaking.

But what’s worse, is that not only have we lost our son, our beautiful daughter has lost her brother. And what is truly crushing is what came out in the medical negligence expert witness statements……..if North Middlesex Hospital had followed the correct timing and procedures for a suspected placenta abruption, the experts have said that Isaac would not only have survived – he would have been fully healthy , with no brain damage.   If North Middlesex Hospital had delivered Isaac four minutes earlier……..it is believed he would still be here today although would have suffered a level of brain damage. Isaac was stolen away from us as a result of the actions of the hospital, but more importantly Isla never got to know her big brother. He should be here with her as she grows up.

And that is the simple, sad, devastating facts.

Isla is an amazing little girl – she is incredibly excited about celebrating Isaac’s birthday this weekend with a super hero and fairy picnic in his honour…….but he should be here…..blowing out those 6 candles that will be on his cake. Life does move on, time does to an extent heal, but when you lose a child there are constant reminders, and you can never heal completely. Part of you is gone forever. There will always be situations when you know he should be here physically with you instead of looking down over you, with his Nanny and his Grandad. And we know that our situation is repeated up and down the country with every other family that has sadly had a child that has grown their wings far too early.

Happy 6^th Birthday strong, inspirational, beautiful Isaac. Your Mummy, Daddy and Sister, along with all of your family miss you very much, and we wish more than anything that you were here with us celebrating today x Through you, there is a lasting legacy. Through you procedures have been changed at the hospital you were born at so that hopefully no other child suffers the way you did, and through you the Evelina Hospital where we all received such incredible care, and where all the fundraising that we do in your memory goes to is able to help prevent other families from going through what we have had to.

Darren x