It was 5 years ago now that my world shattered and changed forever.
Let me start at the beginning… 2015 was a year full of so many different emotions and brand news that I had to get my head around. In the May I suffered a brain haemorrhage and ended up as an inpatient which is how I first learnt I was pregnant. I was shocked, overwhelmed, overjoyed, and confused. I didn’t think it would happen for me.
It was a scary beginning, trying to recover from what had happened to me and to now protect my unborn baby. I was discharged from hospital and had a new lease of life. I was so excited to know that I would soon become a mummy. I started my pregnancy journey as most do – having your 12 week and your 20-week scans. I remember feeling apprehensive but bubbling with excitement. At my 20-week scan my little baby kept hiding – I was sent out and told to do star jumps and bounce to try and get him moving. He was just not playing ball. I ended up having 3 appointments for my 20 weeks as he was being so stubborn.
On the third visit… no one expects to be met with those concerned eyes as they look back at you having scanned your baby. Instantly I knew something was wrong and my stomach knotted so hard, my chest crushed, and my throat fought back hard to stop the tears. “I’m not quite sure but something is wrong with your baby’s heart”. I’ve always thought ever since that my little boy was trying to hide his heart problem so he could live.
This is where my journey began with my little heart warrior. I was transferred to a heart specialist hospital for the remainder of my pregnancy and on Christmas Day 2015, my little boy, Joshua, was born, 2 weeks early.
The love that fills your body as you welcome this little human that you created is so incredibly powerful and one that never ever leaves you.
Joshua was born with severe Hypoplastic Left Heart Syndrome (HLHS). It is one of the most severe heart conditions. Joshua was whisked away very quickly following his birth and prepared for transfer to the Royal Brompton Hospital. This became our home for almost 7months. At day 2 of life, he underwent his first surgery. The first is always the riskiest as they are so fragile. He found recovery hard but as we soon realised Joshua had immense fight in him as well as one of my traits – stubbornness!
At 4 months he then had stage 2 of his surgeries as he started to struggle. Luckily Joshua was a big boy for a heart baby which served him well and enabled staged 2 to happen earlier than planned.
Joshua was a character and became so loved and known to fellow Brompton families and the staff. He was the happiest little thing, with the chubbiest cheeks. He showed so much concern for other babies when they cried and fought so hard throughout his journey.
We were able to take Joshua home twice during his life – once in the May and the second in the July – both for short periods as sadly he deteriorated and had to be taken back in.
In this time, we witnessed our little boy grow and develop into such a beautiful, kind little soul. He was infectious! He also endured things you’d never wish on anyone. There were some truly enormous highs and some heart-breaking lows. However, Joshua had this smile that made any bad day instantly fade away.
Sadly, on his 9month birthday, after having spent a great day round my mum and dads, baking cakes and generally being so happy. He later deteriorated at home, and we had to call for an ambulance who took him into our local A&E.
This night has replayed out in my dreams most nights since I lost him and haunts my thoughts when awake. Things went wrong that night at our local and sadly at 2:34am the following morning he had his 4th and final cardiac arrest and left this world. The sound that left me as he lay lifeless and the begs I remember making to bring him back consume me. I sat holding him for 6hours after he died, and I felt him grow so cold on my chest, so heavy. My life literally crumbled. The feeling of losing your child is indescribable and the pain is unbearable. I just wanted so badly to switch places with him, take his pain away and to let him live. Let him have his firsts, let him experience life’s events, fall in love, have his own family.
The weeks and months that followed are a blur now, but I remember feeling so incredibly numb and so lonely. I didn’t want to burden anyone and tried hard to show I was okay, but you never really are okay after such an event. You just learn to deal with it and how to carry on somehow.
Each year I found myself writing Joshua a poem – a letter almost of how I was feeling, how I missed him so and what the last year had entailed. It has become my promise and almost my yearly tribute to him. I think of him every single day and often get caught off guard and just sob. I feel guilt a lot, especially when I laughed for the first time after he passed away. I felt physically sick that I had shown an ounce of happiness.
I have found life hard since and I now suffer with anxiety, but I found throwing myself into work or a project and keeping busy keeps me in an okay place. I have met a man who I am in-love with and have also had 2 other children, Harrison, and Millie since. Sadly, Harrison too was born with a heart condition. They are both so amazing and fill me with so much love. I also sadly had a miscarriage and lost twins before welcoming Millie.
Loss isn’t spoken about anywhere near enough and has a stigma that almost makes it so it shouldn’t be spoken of, but there are so many of us that have experienced loss. We all deal with it in very different ways but support from others is an enormous and powerful thing. Being able to share your story or provide a shoulder to cry on for someone else is huge. Loss is a lonely place, but we should be able to say their name without feeling shame or being met with awkwardness or eyes that look away. I absolutely love being a mum and feel so incredibly lucky to have had all of my children.
Since losing Joshua, my father and I have made it our mission to bring positive from Joshua’s death. I didn’t want it to have been for nothing. We have set up a charity called “The Joshua Lynagh Foundation”, The JLF, which went live on his anniversary this year – 26th Sept. The charity is to help others who have children with congenital heart disease (CHD). I want to ensure no one has to experience what I did. We aim to raise awareness of CHD, provide education to families and medics (especially those medics at local hospitals who do not have the expertise to deal with cardiac children) and help empower families, so they feel heard and not isolated. My ultimate aim is to learn from failures we experienced that night and to ensure they do not occur again.
You can learn more about Joshua’s story and The JLF at www.jlftrust.org.uk – you can help raise awareness of the charity by liking, sharing and donating. We can also be found on various social media sites:
Our first fundraising project, “ECHO”, is to raise funds to purchase a Vivid IQ portable echocardiographic machine with three probes (baby, child, and teenager – S12, S6 and S4) for The Royal Brompton Hospital.
This piece of equipment will help diagnose life-threatening heart conditions. It will be used on between 500-1,000 children per year, helping up to 5,000 children over a 5-year period.
As a portable machine, it will allow clinical staff to take it to other hospitals where children present to A&E very sick and for newborn babies. These hospitals will include Chelsea and Westminster, St Mary’s, Hemel Hempstead, and The Royal Brompton and Harefield hospitals. The total cost is approximately £50,000.
This piece of equipment will help save children’s lives. It will enable clinicians to scan patients to diagnose: sick newborn babies, children with holes in their hearts, and those who develop heart problems, such as myocarditis (inflammation of the heart) or cardiomyopathy (heart muscle disease).
If you enjoyed reading this inspirational story then please check back this week as others share their stories too. Find out more information here.
The amazing Sue France shared hers on Monday here’s the link.
The fantastic Kiki Deville shared hers yesterday here’s the link.
You can read Violet and Arthur’s story here.