Little Evie Lives Life to the Full
Jennifer Taylor's gorgeous wee daughter Evie has already had four open heart surgeries. Jennifer share's her story with us.
Our families journey began in 2016. It was my first pregnancy and I was so excited to find out if we were having a boy or a girl, I never thought for a second that something could be wrong with our unborn baby. The sonographer was hovering over the heart for a long time and my husband Brian instinctively knew there was something wrong. I was blissfully unaware, I didn’t want to believe the possibility of anything except a healthy baby. We were referred to have a cardiac scan at maternal fetal medicine and and were told in a tiny room with four chairs, a table and a box of tissues that our baby girl had tetralogy of fallot, MAPCAS and severe pulmonary stenosis. There is quite a range of severity with TOF so we weren’t sure how things would go when she was born or how long she would be in the hospital. We weren’t sure if we were even going to be able to take our baby home. The rest of my pregnancy was overwhelmingly hard. We didn’t want to have a baby shower, we didn’t really want to buy anything for the baby or set up her room. Looking back I think this was our way of protecting ourselves in case things went wrong during the birth or shortly after.
Our baby girl Evie arrived on the 15.10.16 with quite a bang – I ended up having an emergency caesarean. When I went to see her in NICU the poor wee thing was covered in wires, monitors and the CPAP was covering most of her tiny face. This was our first introduction to the medical world that has become our norm. We were able to take Evie home after six days in hospital.
Evie had her first open heart surgery in 2016 at 6 weeks old and flew through recovery leaving hospital after 7 days. Apart from her post op checks, her beautiful wee zipper and daily aspirin, life was pretty ‘normal’. Evie was a very vocal baby who loved to sleep but only in someone’s arms and never at night! She was so tiny and precious. A CT scan revealed that her first surgery hadn’t grown her pulmonary arteries in the way the team had hoped so it was decided that Evie would have another surgery in 2017 at five months old. She flew through again being discharged home after six days. That year we moved from Auckland to Whangamata – a decision that was heavily influenced by Evie and everything she had been through.
Evie had given us a new outlook on life and we decided we wanted to move somewhere quieter, near the beach and this also ensured that I could be a stay at home mum. Evie had her third open heart surgery in 2018 when she was 19 months old. I thought that each time Evie had surgery it would get easier. It does in the sense that you know what to expect but in almost every other way it feels so much harder as she gets older. She is more awake and aware, but she really doesn’t understand what is happening. Recovery from her third surgery was extremely hard on her – she went into her shell and didn’t want to speak or smile she was so dismayed. It was incredibly hard to watch - as a parent you just wish with every fibre of your being that you could trade places. It was a mammoth 10 hour surgery. It certainly felt like the longest 10 hours of our life. During this time we realised that Evie’s condition was on the more severe end of the scale for TOF and we were told that she may not ever get her full repair.
The older and more active Evie got, the more we noticed how breathless she was and how her body just couldn’t handle physical activity like most other kids her age. It never slowed her down though. She would go and go until she was puffing and blue. We would have to carry her around to keep her still so she could catch her breath. In January 2019 Evie had an episode of cyanosis and 40+ temperatures that resulted in a helicopter ride to Starship. This was the scariest moment we’ve had as a family so far. We had no idea what was causing it and although the surgeries were difficult they were planned and we had time to mentally prepare. While in starship after a week of constant blood tests we found out that she had endocarditis which can be fatal if left untreated. Luckily it was caught early and she was treated with IV antibiotics for six weeks. During her treatment for endocarditis Evie had another CT and her surgeon decided that she would be able to get her full repair. This was another huge 10 hour surgery. She spent two weeks in hospital and spent her 3rd birthday there. Evie is just so incredibly resilient – even though these hard and painful procedures happen in Starship she loves it there. She loves the 23B staff, she adores the playroom and she loves staying at Ronald McDonald House. If you couldn’t see Evie’s scars you would have no idea what she’s been through. She is full of energy and laughter, she just loves life. She is on the go 100% of the time but she doesn’t get breathless like she used to, she even says ‘the doctors fixed my special heart and now I’m not huffy puffy anymore!’ We are so thankful for the ongoing support we get from Heart Kids, the Thames coffee group is an amazing space where we can connect with other parents who just get it. Evie loves getting to meet her ‘special heart friends’ and no doubt will love going to the Heart Kids camps when she gets older.