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"We nearly lost her": Pixie's story

April 30, 2024

It was during Sam’s 20-week pregnancy scan that doctors discovered something was wrong with her unborn baby’s heart. The following week, Sam, who lives near Aberaeron in West Wales, was sent to the Foetal Medicine Unit in Cardiff, where it was confirmed that little Pixie would be born with a form of congenital heart disease called Tetralogy of Fallot (TOF). At five-and-a-half-months old, Pixie underwent heart surgery at Bristol Royal Hospital for Children. Thankfully for Pixie’s parents, they were able to stay just a few minutes’ walk away from their little girl, at Ronald McDonald House Bristol. Now, aged three, Pixie is taking on a very special challenge to give something back to the Charity that helped keep her mum and dad close.

Guest blogger: Sam

Following Pixie’s diagnosis with Tetralogy of Fallot (TOF), I was given extra scans throughout the rest of my pregnancy, so doctors could closely monitor our baby’s health. It was a scary time, especially as it was during Covid, so my husband Rhydian wasn’t allowed to come to any of the scans with me. We both have older children from previous relationships; mine is 16 and Rhydian’s are 18 and 20. Although we weren’t new to parenting, this was a completely different and challenging situation for both of us and it was a very anxious period.

I gave birth to Pixie by planned C-Section at Singleton Hospital in Swansea on 20 October 2020. Rhydian was allowed to be with me for just a couple of hours after the birth, but as Pixie was taken straight to intensive care, I told him to go with her. I was being violently sick, and Rhydian wasn’t allowed to come back to me after he’d seen Pixie. It was really difficult, especially as I was on the post-natal ward, surrounded by other mums who had their babies with them, and I was without mine.

Luckily, Pixie was only in intensive care for 24 hours and because she was doing well, she was allowed to come and join me on the ward after that and we both stayed in hospital for another three nights.

We always knew that Pixie would need surgery at around six months old and that operation was scheduled for 6 April 2021. On 1 April, we went for what was supposed to be a three-hour pre-op appointment at Bristol Royal Hospital for Children. The doctors put her through various tests, including bloods and an electrocardiogram (ECG). Due to her having another condition, called laryngomalacia, which can cause breathing problems, she also had to have a camera inserted down her throat, via her nose. She had a bad turn after that test and suddenly, the emergency buzzer was pressed, and the room filled with medics.

At that point, it was decided that Pixie wasn’t well enough to go home, and we were told she’d stay in hospital until after her operation. Rhydian made the five-hour round-trip in the car to go home and pack our bags. I stayed on the ward with Pixie and after a short while, the nurses told us about Ronald McDonald House Bristol, which turnout out to be a complete Godsend.

When we checked into the House, the team made everything so easy for us. It was homely and comfortable. The staff couldn’t have been more helpful, giving us a tour and explaining how everything worked. There was an unlimited supply of tea and coffee, which was much needed, and even donations of food from kind supporters of the Charity. It was brilliant; we didn’t have to think about anything. Most importantly of all, it meant we were just around the corner from Pixie.

I stayed in the House with Rhydian for two nights while Pixie was in intensive care, then he stayed there alone when I was able to join Pixie on the ward. Rhydian wasn’t allowed on the ward when I was there, due to the Covid restrictions, but he kept himself busy by doing a bit of maintenance work in the House to help. He went to the local Screwfix to get some tools, fixed the garden fence, and trimmed back some hedges. I think he enjoyed being able to give something back.

For me, it was great to have somewhere to go back to, to cook some food, have a shower and reset. Rhydian and I would swap over while I went back to the House for brief periods. We stayed for two weeks in total but know that that will not be our last time in hospital with Pixie. She still has a heart murmur and will need a pulmonary valve replacement, potentially in her teens, but that remains uncertain, so we just take each day as it comes.

In the meantime, Rhydian and I have been wracking our brains for a way to give back to Ronald McDonald House Charities UK, since they stepped in and gave us a place to stay close to the hospital. We’re all too aware that we need their help again some time in the future. Without them, we don’t know what we would have done. What they do for families in situations like we found ourselves in really is invaluable.

We considered doing a sponsored walk from Singleton Hospital, where Pixie was born, to Ronald McDonald House Bristol, but the route planning seemed to be quite challenging and, in parts, unsafe. We decided to ask Pixie how she’d like to raise money and her response was: “I want to ride my bike!”. Then the penny dropped, cycling the equivalent mileage from Singleton to Bristol (82.2 miles) in a safe environment around the cycle routes of Ceredigion.

Despite Pixie not owning a bicycle, other than a balance bike, we thought it was a fantastic idea to raise money for the Charity, whilst learning to ride a bike. We took her to Cyclemart and the training begun! Her challenge started on 1 April 2024, three years to the day that she was admitted to hospital and has no definite end date.

She is doing so well with her challenge and with a lot of energy to burn, she seems to have found her passion in cycling. People have been so generous donating to her JustGiving page, that she’s already smashed her target and is raising lots of awareness of the Charity. Rhydian has a friend living in Canada, who just donated 100 Dollars to RMHC Canada, having been inspired by Pixie’s fundraising. Our own community here in Llanarth have been so supportive as well, which has been lovely. Josh Tarling from the professional cycling team Ineos Grenadiers was at school with Rhydian’s son and when he heard about what Pixie’s doing, he was kind enough to send her a letter and a cycling top.

We nearly lost Pixie three years ago, so while not putting her under pressure, we’re 100% behind her challenge and don’t want anything to hold her back. We know our girl’s sheer strength and determination will help her complete this challenge and we couldn’t be prouder parents.

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