I found out I was pregnant in April 2019 at the age of 23. There were no signs at the early scans anything was wrong. I’ll never forget the words from the nurse at my 20-week scan: “I’m just going to get a second opinion.” Within 48 hours, I was being told my baby had a genetic heart condition called Unbalanced AVSD, hyperplastic left heart syndrome. It means my baby had practically no heart on the left-hand side. I was devastated.
The hospital team started talking, I zoned out. The whole conversation was muffled because it’s news you don’t want to hear. They gave me three options: surgery after birth, palliative care or a termination. I was nearly 24 weeks gone. I’d named my baby, why would I choose to end her life? Even if I’d found out earlier, I wouldn’t have changed my decision.
I knew of Keech Hospice Care, but I just thought it was somewhere you receive “in-house” care. I couldn’t have been more wrong! My baby was technically on palliative care before she was even born. Meeting Keech’s specialist care team for the first time while pregnant, I knew I had everything I needed with them. They were always available over the phone or in person and they still are. Keech helped me understand exactly what was happening.
Macie-Ann was born on the 7 January 2020, and, amazingly, she only needed a little bit of help when born. Her heart surgery would be in London, and we now had two weeks to make the difficult decision of whether to go or not.
Macie-Ann’s father walked away when she was three days old. He couldn’t deal with her diagnosis and didn’t want the heartbreak. I thought “that’s fine for you but I still have to be here and pick up the pieces. What am I going to do now?” I hadn’t even come home.
I was still in hospital.
Keech was a constant support when I arrived home with Macie-Ann. The charity’s amazing specialist care team visited us each week. They came to appointments with me and explained things in normal terms. It was such a comfort as I still really didn’t understand what was happening.
More than that, they were someone to talk to, especially when the pandemic hit. It was amazing to have my mum and dad at home, but Keech were literally the only other people I saw. COVID-19 hit at the wrong time. If only we’d been able to visit Keech too as well as being supported in our home. We’d loved to have visited the hospice’s gardens and used the hydrotherapy pool with Macie-Ann. The team would have been there to help me, and I know we’d have felt totally comfortable.
The operation I had been told about couldn’t go ahead. Macie-Anne’s tests showed she had the same condition in her lung bronchioles as she had in the left-hand side of her heart, plus a heart murmur too. It was strange because as soon as the doctors said, “no, we can’t do it,” I felt a moment of relief. I wasn’t going to have to make the decision. At that point, we came to terms with what was going to happen. We knew Macie-Ann would die.
Keech was there when I needed it the most. Every day I woke up to hear Macie-Anne crying, I thought “I’m blessed. This is one more day I have with her.”
One morning, I didn’t wake until 8am and instantly knew something was wrong, as Macie-Ann had normally woken by then for a feed. I went straight over to her and found she wasn’t breathing but she was still warm. I left Dad upstairs to get my thoughts together: who did I need to phone? My mum was so shocked with how calm I was. I had to stay calm, calm enough to make that phone call. The Keech team were the first people I phoned. As soon as I ended the call and started to go back upstairs, that is when I broke. I lifted Macie-Ann out of the Moses basket and just sat with her on the floor with her in my arms and cried. Keech came over straight away and we gave Macie-Ann a bath together. To have Keech’s specialist nurses there was a huge support as we’d built such a strong relationship over the weeks.
It’s been so difficult; I’m slowly getting there but our lives will never go back to normal. Macie-Ann was a miracle. She proved everyone wrong by living to 15 weeks and I’m so glad we had that time. Keech’s specialist care team has had a huge effect on me. I literally don’t know where I’d be without them, and I will fundraise for Keech until the day I die. I urge anybody, if you can support them in anyway, please do. I never knew I would need them.
Our services are all FREE. Just call our FREEPHONE number 0808 175 0810 or visit www.keech.org.uk/refer.
From the moment you or a loved one are diagnosed with a life-limiting condition, get in touch. Our specialist care team can support you over the phone, in the comfort of your own home, in the community or at the hospice itself.
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