Tuesday
Tuesday
February 2024
There were two Tuesdays that were significant to you.
There was the day we drove to Bristol to get the answers to the many questions we had and there was the day we were discharged from the hospital, without you.
I am sorry baby girl, but we weren’t thinking “positive” thoughts, or hoping for miracles that day. I think deep down we already knew what the answers would be, but we were told to go there and find out what the experts would say, so we did. They were the specialists who could confirm what they weren’t able to tell us in Exeter. They would tell us exactly how poorly your heart was and what they could do for you. We’d waited 5 long days for this appointment. 5 days in a suspended reality, not able to relax, to plan or to live. We were just waiting. We didn’t feel any better after that appointment. It was worse.
I remember feeling so sick on the drive. I sat in the passenger seat, reading up on the anatomy of the heart. I hadn’t done loads of research as maybe others might have. I didn’t feel like I needed to. I knew enough. I understood what the heart does and what it needs to do and what your heart probably wouldn’t do. We were simply waiting for confirmation that all this was real.
Your uncle Chas was in hospital in Bristol. I couldn’t stop thinking about him that day. I couldn’t stop thinking about all the times I had visited him when he was there, or when I took him to his appointments. I wondered if he had the same feelings I was having that day: secretly knowing that there wasn’t really any good news to be had, but going along with it because what else could you do?
It’s not a very nice-looking hospital. Only one lift was working. I got bored of waiting and my nervous energy carried my exhausted body up three flights of stairs. We followed the signs to where we needed to go. I didn’t like it. I didn’t feel comfortable. I didn’t want to come here again. I didn’t want to have you in that hospital. I made that decision before I even got to the waiting room.
I laid on the uncomfortable bed, in the scanning room. It was boiling hot in there but freezing cold outside. We’d been for a quick walk before our appointment to settle our nerves, but it was so cold. I don’t want to remember that walk. I lay on the bed trying not to cry and I saw you on the screen. I held back tears because it was so hard to look at your little body, which just seemed perfect to us. They spent so long looking at your heart, trying to work out what was going on. We kept hearing your heartbeat: each time i heard it, I felt like my own stopped. I had to go for a wee to get you in a better position. In vain, I thought doing that would help us. You weren’t in the right position, so I had word with you in the toilet and you moved. You were co-operative. I already felt like we had a relationship.
They sat us in a windowless room. There were no pictures. It was soulless. Two people spoke to us: the consultant and the cardiac nurse specialist. They explained everything so clearly and showed us how a heart works and how yours would work. It was grey, though. Your tiny little heart was too small to be exactly sure of what was going on. The only thing they were 100% on was that you would need immediate open-heart surgery after being born. You would likely need at least 2 more surgeries before you started school, if you survived the first one. This was one of many scenarios. There were no guarantees you would even be able to have those surgeries. It may not have even been possible: then we would have just helped you end your life comfortably. Or maybe medical science would have helped rebuild your heart and got it working, but at what cost? Would you have spent a lifetime in and out of hospital? Would you live to be an adult? Would you spend your childhood knowing that adulthood might not happen? Would you be able to run around with your sister, your friends? Would we spend our life driving up and down the motorway for your healthcare appointments? Would we move to Bristol? There were so many questions, but the answers were all grey. Not black and white: there were no clear answers. But there was no colour for you. We just couldn’t imagine bringing you into the world when there was so much uncertainty about your quality of life, or even your life expectancy. There was a glimmer of hope which I misunderstood, in my exhausted state. They wanted to see me again, in two weeks. The hope was your heart would have grown a little by then and we could have more information. They would know what kind of surgery you would need and what they might be able to do. I asked if would really change anything: the answer was no. You would still be very poorly and need open heart surgery when you were just days old. I would still need to bring you into a very uncertain world.
I am sorry. At that point I knew I couldn’t wait two more weeks. I definitely couldn’t manage another 18 weeks with this anxiety for your health and your survival. Those 4 days had been hell. You had kicked me every day since that 20 week scan. You kicked me and told me you were there and I couldn’t bear it. Every movement I felt broke me.
We came home numb. We hadn’t heard anything we weren’t expecting. We just heard it in detail. We read it in detail. We asked questions. I asked what the best-case scenario was for you. That was the tough one. I understood the worst case, which no parent wants to hear. But we didn’t want the best-case scenario either. It just wasn’t good enough. I felt bad, like we’d somehow wasted their time: they’d given us surgical options and I didn’t feel any of them were good enough. Not good enough for you, my baby girl. Not a good enough reason for me to risk you dying on your way here if the best option we had for you was one we didn’t think was good enough for you. You are no longer growing inside me because we didn’t think your life would be good enough to bring you here, fighting. We wanted the best for you, my love. We wanted you to have a full, wonderful life; full of opportunities and possibilities. A life of adventure, love and experiences. Not a life that would have been uncertain, restricted, uncomfortable. It wasn’t a life that we wanted for you. We are sorry.
We left hospital on Tuesday 31st January 2024, a week later. There was no car seat with a little girl in it, like we’d done with your big sister. There was a box. Inside the box were footprint moulds, hand and footprints, photos, a teddy, your blanket and a keyring for each of us. But we didn’t take you home.
We met you again, in your little basket and we exchanged a tiny blanket that we’d held, wept into and placed on you. We took home the blanket I knitted you and a tiny blanket that you’d touched. I placed a silver heart in your hands, and I have the other part. Your daddy has another one. We didn’t get to take you home. I felt like I was walking on uncertain, unsafe ground when we left the hospital. I saw a couple with a tiny baby in the hospital entrance and wondered what their story was. I felt uncertain about life outside of that room where I gave birth to you. It all felt so very wrong. I still looked pregnant, but you weren’t there. I was exhausted, as I’d just had a baby. But I didn’t bring her home.
I came home with antibiotics and injections to continue my medical treatment. But I didn’t come home with you.
It’s a month since I left that hospital room. Everyone hugged us so genuinely. Everyone was so respectful and kind to you. They all told us you were beautiful, and that I was strong. I didn’t feel strong that day baby girl, I felt like my bones were broken and my heart was weak. Everything hurt. I’m sorry I couldn’t bring you home, baby girl. I will always be sorry.
x
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