Bertie’s Heart Day

This week’s blog was written for us by Melissa Kynoch, about her son Bertie’s heart surgery. After a traumatic time last January, Bertie celebrated his first heart day this week! Thank you so much for sharing your story with us Melissa.

I’m watching my son Bertie play with his older brother Dei, he’s full of beans and smiles.  Happy, content and full of life.  He’s healthy, his skin is a nice peachy pink and he isn’t battling to breathe, he really has blossomed since his heart surgery a year ago.  I have to keep reminding myself of that – he’s ok, he’s well, because it’s very easy for me to be right back there; the fear that he might not make it, he might not survive.

Bertie was, impressively I think, diagnosed with a complete AVSD when I was 14 weeks pregnant. Even though his heart chambers were the size of grains of rice the doctor was able to tell me he had 2 large holes in his heart and leaky valves, so I knew very early on he would need major open heart surgery to save his life and he would need it when he was just a few months old. Knowing something and experiencing it are, as I was to find out, two very different things.

Bertie spent the first 8 weeks of his life in Birmingham Women’s NICU. He had gone into heart failure very early on and was given medication to counteract this, he also has some bowel issues which prolonged our stay there.  When we finally did come home I became Mom and Nurse.  It’s really important at this point I stress that this was not a hardship in any way – I mean who wouldn’t want to care, in any way possible, for their child – it’s an honour right? But I was on my own with a baby and a 3 year old having to make medical decisions that I hadn’t had any medical training for – I had to learn quick!

Bertie was always a tinge of blue and had always battled to breathe, so when we were taken by ambulance to Birmingham Children’s Hospital for his heart to be repaired in January last year, as much as it was scary, it was a welcome relief.

Richard, Bertie’s Dad, had come to Birmingham to visit for the weekend so he decided to stay, which was amazing as I had always anticipated doing this by myself.  In fact Rich hasn’t left Bertie since then, he relocated from Surrey to just 5 minutes down the road from us, but probably classes our house his first home he’s here so much.

We were told Bertie’s surgery would be the following day, we never left his side. I slept in the chair next to his hospital bed and Rich slept in the kitchen on the ward.  We knew the risks of surgery and had been given the percentage of the babies that don’t survive, those facts don’t disappear easily, so the thought of ‘is this the last night i’m going to spend with my son’ was like a constant ticker tape in my mind. We never slept a wink.  The following day surgery was cancelled.  So many emotions; disappointment because I just want my son to get well, sickness in the pit of my stomach that we have to go through it all again and overwhelming relief that if we are going to lose him it’s not going to be today.  Surgery was cancelled the following day too. Bertie’s surgery finally took place on 22nd January 2020.  It’s hard, very hard, to describe that day. Washing Bertie ready for surgery, carrying him to theatre and having to say goodbye to him not knowing if we were going to see him alive again – there aren’t sufficient words in the English language to explain how that feels.  It’s a living nightmare, a twilight zone, the fear is suffocating and palpable.  It took every ounce of courage to not just run away with him out of the hospital. Bertie was put to sleep whilst Rich and I told him how much we loved and adored him, we kissed him and told him again that he is everything that is good in our lives, we then had to tear ourselves away from him. We held each other and cried.

Seven hours Bertie was in surgery.  We kept each other buoyant and distracted as much as possible.  Eventually we were told we could be with him. I was prepared to see tubes, machines, wires and cables, what I wasn’t prepared for was how bloated and swollen his head was, it was so upsetting.  But he was alive and surgery had gone well.

I wish I could say all the children in intensive care get better, but heartbreakingly that isn’t the case.  The morning after Bertie’s surgery I arrived at PICU to see a young boy a few beds down having chest compressions, then later on that day the baby in the bed next to Bertie also died.  I cried and cried and cried. Those families, their pain and loss, it’s still overwhelming.  Thankfully we had an incredible nurse looking after Bertie who just held and comforted me.  

For a couple of days Bertie’s recovery went relatively smoothly. Then very early one morning my phone rang, it was the hospital. Bertie had become unresponsive and had stopped breathing for himself, we ran from the parent accommodation to PICU.  I could feel myself becoming hysterical, neither Rich nor I have ever experienced fear like it, we thought we had lost him.  The next few hours were agonising but eventually Bertie started to recover.

After 9 long weeks Bertie was discharged from Hospital.  I had lots of emotional support during that time but it was still incredibly difficult, especially seeing the toll it was taking on Dei too.  I’m a strong person, I have really good coping mechanisms and I know how to look after my mental health, but this still really took it out of me, my hair had really thinned and I was tired.  We were all very happy to be going home!  

Rich and I are deeply grateful to the team at BCH, the doctors and nurses both on PICU and Ward 11.  It’s because of them I’m sitting here now watching my sons play.  Bertie is off all his heart medication and doing very very well, he’s very vocal, very very smiley and happy.  He can even pull himself up on the furniture now too, oh and he now has 3 teeth!!! In fact the only sign that Bertie ever had a poorly heart is the beautiful scar on his chest – and even that’s faded. 

My sister recently described our experience as ‘unimaginable’ – I think that is a pretty accurate description of what Bertie went through.  He has been so brave, so courageous.  We love him so very very much, he is pure joy and happiness to us, Rich and I still can’t believe we have him, really honestly – nobody is as blessed as we are.

If you would like any information or support relating to heart conditions associated with Down Syndrome, take a look at the Down’s Heart Group