The day my life changed forever.
I’d been to my 20 week anomaly scan the day before (alone as we couldn’t take Senna in with us and had no childcare) and something wasn’t quite right.
We had the long agonising wait until we saw the fetal cardiologist at LGI the next day. We didn’t sleep that night but incredibly it was the first night that Senna had ever slept through - he must’ve known that Wade and I just needed each other and didn’t have the ability to put on a brave face for him. I was so proud of him that night and celebrated his timely milestone with cuddles and smiles before heading off early to LGI with our hopeful hearts.
Walking into the fetal medical unit my mind was all over the place, jeez I was shaky, my stomach was churning, all the questions fizzing around; ‘what is wrong with my baby?’ ‘what if she’s poorly?’ ‘what if she needs medical help when born?’ ‘What if she needs surgery?’ ‘What if she can’t be like a ‘normal’ baby?’ The question ‘what if my baby dies?’ never really crossed my mind, perhaps I was protecting myself from that thought but probably most likely I just never thought that would happen to me, to my baby.
We spent all day at the hospital that day waiting for appointments, having scans, making far too many trips to top up the hospital car park ticket (£27 for the day - a price we found out that shockingly even the NHS staff have to pay each day), having a silent lunch date at which food was only bought not consumed, thinking of Senna and hoping he wasn’t wondering where we were, holding each other’s hands in a way that said ‘I’m here’ but avoiding eye contact so not to set each other off and acknowledge our new reality.
We had a scan by the obstetrician who suggested what the problem may be and then our fears were confirmed and actually made worse by the foetal cardiologist. Finally, we ended up in that god-awful ‘bad news room’. Wade and I on one side of the polished wood coffee table and the cardiologist and midwife on the other. Their heads were tilted to one side, eyes were pitiful and voices soft and careful. It was bad news, we knew that, we weren’t quite prepared for just how bad. We were drawn pictures of a ‘normal’ heart compared to ‘twin 2’s’ heart. We understood (I think), our silent nods and occasional sniffles half accepting what we were hearing.
It was like I was floating around in a nightmare that wasn’t mine, I was in someone else’s shoes, surely? Both my babies were kicking me, both growing at a normal rate, we had just posted our gender reveal video on fb just 5 days previously and celebrated the idea of having twin girls (poor Senna many joked), we were on cloud 9. I was going to be a twin mummy, I felt so excited, giddy and blessed. The news hit me like a sledgehammer to the face and, although I think I accepted it nearly immediately, I just couldn’t believe how fast my world could crumble. I was numb, well, numb apart from the movement in my tummy from my girls.
Our girl, named ‘twin 2’ at that point had Pulmonary atresia with ventricular septal defect and major aortopulmonary collateral arteries. I know, such a long name for such a little baba! It was a fatal condition, but possibly operable to ‘prolong life’- we needed more tests at this stage to determine the possibilities. At the extreme worst she would be inoperable, at best they may be able operate to help her blood flow to the lungs. It wasn’t fixable though; she could never be ‘cured’ with surgery. We were told they had known patients live to their 20s following surgery. This news hit us hard. I thought they were going to say to their 60s not 20s! Her heart didn’t work like ours does. Her pulmonary artery was practically non-existent and completely blocked, she had a hole between her ventricles, had grown her own capillaries from her aorta to her lungs (clever little thing) and the heart itself wasn’t the right way up. We were told there was very little hope for our baby girl and were given 3 options. Impossible decisions were to be made over the next few weeks. The medical staff left the room and we broke down into each other’s arms.
We left the hospital, I called my mum and sister from the car before we set off, swallowed the lump, wiped the eyes and drove off...smashing the wing mirror in the process. What a day.
