Throughout Heart Month, I’ll be sharing various stories from heart families about their experiences. Today’s post is from Helen, Heart Mummy to David who, like Jessica, has hypoplastic left heart syndrome, who is sharing the story of those early days from finding out about David’s heart condition and the first few days after his birth. Today also happens to be the first anniversary of David’s Glenn procedure (his second major operation) – happy heart day to David and thank you to Helen for sharing your story.
Louise George very kindly asked me to do a guest blog for Heart Month, and I thought fantastic! I’d never blogged before but clearly this was another opportunity to write about congenital heart defects from the point of view of one of my “causes”. I could talk about my #hospitalbreastfeeding campaign on Twitter and discuss the need for specialist support on children’s wards for breastfeeding mothers. I could talk about Lagan’s Foundation and the work they do for families of children with heart defects and feeding difficulties. I could discuss the variations in community support for families of all types, including those whose children have complex needs. Oh yes, I had loads of options! Open up a Word document!
And then I attended the Lagan’s Foundation Information Day on 13 February. With a number of healthcare exhibitors it seemed like another opportunity to discuss my pet projects, network and raise the profile of a charity I believe in. Some of those things happened too. But something else happened as well. I remembered that before I was in a place where I could campaign on social media, I was in a place where I couldn’t see past the twenty-four hours ahead of me. Like so many other people in that room at the Palace Hotel, I had been in a place where the supposed certainties of my life had been thrown out of the window and a new, confusing, frightening life was unfolding before me. There was a time, only 16 months ago, when I first became a heart mummy.
You would think I couldn’t have forgotten that, and of course you never do. But we all have our coping mechanisms. Fundraising, campaigning, organising events, raising awareness, blogging, organising…. it’s all a way to make sense of what has happened to you and your family and a way of taking control over the rollercoaster you were forced onto and which is far too big and scary for anyone to ride. Talking to other families about shared experiences brought me back to the place when it was all new and terrifying. We talked about the reactions of our friends, and the changes to our lives. We talked about life on ICU and HDU, and the antics of the healthcare professionals who were by turns heroic, frustrating, compassionate, distant and amazing. We talked about the realities of life at home with a sick child and how being extra vigilant and administering medications becomes a normal part of life even when your child is seemingly healthy. And we talked about the times when they are not healthy. And what that entails.
So rather than weave a narrative around my heart family from the perspective of 16 months in and several favourite causes, I have decided to go back to the realities of those first 5 days with David. And I don’t want to waffle in prose in my usual style because it wasn’t a gentle, rhythmic time. It was stark and harsh and therefore deserves to be in bullet points:
- Until I was 38 weeks pregnant we didn’t know there was a problem at all. I was planning a second homebirth
- Until I was 38 ½ weeks pregnant we didn’t know how serious a problem there was
- At 39 weeks we were told David has Hypoplastic Left Heart Syndrome (HLHS). It is non-life compatible. Someone reminded me of that phrase the other day. It gave me chills.
- We were given the standard 3 options. So we had the option to kill our child. And I am glad we had that option because my first thought on diagnosis was “I don’t want this”.
- We had hardly any time to decide which route we wanted to take. But on that Thursday at St Mary’s Hospital I learned what I had always suspected: I married the right man. Phil and I went outside in the fresh air, dried our tears, decided that we could totally do this and give our boy a fighting chance and decided on the surgical route. A high five in the car park sealed the deal.
- The next day, Friday 20th September, David was born by caesarean section. The next day he was transferred to Alder Hey. I left hospital, having no desire to stay in Manchester when my baby was in Liverpool. I left the hospital in a lot of pain, with standard paracetamol and ibuprofen my constant companions.
- At Alder Hey I refused to engage with the healthcare team whatsoever. I had room in my head for two things: expressing breast milk and being in pain. That was it. If it wasn’t a breast pump or a painkiller I wasn’t interested. The Cardiac Liaison Nurse (the lovely Gill who I am now very fond of) insisted that the surgeons, anaesthetist and so on would wish to speak to both Phil and me. Not a chance I said.
- Phil’s sister Judith is our sons’ legal guardian and she and Phil spoke privately to the CLN. I have no idea what was said but as far as I know they had to first persuade poor Gill that I wasn’t a battered wife under the control of my husband. I just genuinely had no interest in engaging with the pre-op process. They cited duty of care for my mental health and that was that.
- The nurses, once this had been explained to them, were amazing. One of them practically rugby tackled poor Prem Venugopal to the ground when he approached our HDU cubicle with me in it on my own. They wouldn’t let a doctor near me! I only know this because Phil later told me. I didn’t notice at the time. I didn’t notice much.
- You see, there weren’t any choices. There was finding out all about the risks and statistics and dangers and then signing a form to say that we wouldn’t sue Alder Hey if David died. But there were no choices. So why, in my state of shock, would I want to engage in that process? It was Norwood procedure or death. And that was that.
- We were given information by Little Hearts Matter, the single ventricular heart condition charity. I met Suzie from LHM for the first time at the Lagan’s Information Day and confessed that I still get a twitch when I see their tweets and posts as they remind me of those awful first days. I still haven’t read their information pack. Not yet.
- On the day of the operation Phil and I had 7 hours to wait. At one point we sat outside the hospital and I asked him “what outcome do we even want from today?” And he said he didn’t know. You see, we had seen stories about heart babies and the struggles their families go through. We really didn’t know if we could face it. Our goals from the day of David’s birth had been: 1. Meet him 2. Hold him 3. His older brother Edward to meet him 4. His older brother to touch / stroke / hold him 5. His grandparents to meet and hold him. Those goals having been met there was a large part of both of us which was ready to let him go. It was all so unreal and he wasn’t our son back then. He was just a baby we didn’t know who had turned our world upside down.
And then nurse Lyndsey came in to tell us he was on ICU. He had survived. She didn’t give me much time to take that in, to her that was fairly straightforward. Most of them do survive the surgery after all (70% we were given to understand). But I needed a minute. He had survived. It was like Dorothy stepping out of the black and white house into the technicolour land of Oz. He had survived. There were no guarantees, no certainties, but we were being allowed to enter stage two – the months between Norwood and Glenn, first and second ops. We didn’t just have five days with this baby, we potentially had five months to get to know our son.
Then I was involved. Then I wanted to know what was what. Then I had opinions. I still had panic attacks and meltdowns and anxiety and depression and all the other glamour that goes with having a normal baby let alone one with half a working heart. But I was back, me, not just some spectre living from moment to moment. There was the glimmer of a future.
16 months and two open heart surgeries on, David is the healthiest heart baby you could ever wish to see. And I have a whole new life campaigning for all sorts on social media. But it wasn’t always like that. As every heart family knows only too well.