Tetralogy of Fallot: Roxy’s Story

Rebecca found out that her daughter had a heart condition, Tetralogy of Fallot (TOF) at her 20 week scan. Roxy was born during the coronavirus pandemic. This is their story:

The last 12 months have been a rollercoaster, the type of rollercoaster you wouldn’t wish for anyone to have to get on, but yet one that you’re so proud of being brave enough to ride.

I’m starting our story with the happy ending, because we have the happiest ending with the most beautiful, special, inquisitive little girl who fills our lives with so much joy. But it’s an ending I wouldn’t let myself imagine a year ago…

Sometimes in life you are thrown a curve ball, it hits you when you least expect it, you never think this is going to be you… until it is and life will never be the same.

Wednesday 12th February 2020, the day of our 20 week scan. The evening before I felt our baby kick for the first time, so ironically this was the first scan I attended in my pregnancy where I didn’t feel nervous (I was a very anxious first-time mum-to-be).

I knew this was an important scan, but I never thought that we would be told something was wrong with our baby. Our sonographer started by explaining she’d recently received some training on how to spot heart defects and that she thought our baby’s heart hadn’t formed properly.

We were referred to Leeds General Infirmary, where doctors confirmed our worst fears – our little girl had Tetralogy of Fallot (a combination of four heart defects).

The only way I can describe how I felt was like falling into a big dark hole. Roxy’s dad and I expected to be walking out of the hospital, excited about finding out the gender, discussing nursery room themes and calling at a shop for a ‘first outfit’. Instead, we walked out with tears in our eyes, not knowing how to tell our closest friends and family that we had a poorly baby who would need open heart surgery in the first six months of life.

I still don’t know how I got through those first few weeks after diagnosis. I was shocked, numb, angry, upset and wondering what I’d done wrong. Why did our little girl deserve this?

I remember the doctor telling us our child would never be an Olympic athlete. I was so upset because what if that’s what she wanted to be?

Amongst the upset, we also felt grateful to our sonographer for spotting the heart defect early as it allowed us to feel supported throughout pregnancy from the specialist doctors. It also allowed us to prepare mentally for what was to come.

I joined social media groups and got talking to other parents in similar situations (some of these lovely people I have formed lifelong friendships with!)

After a few weeks I started to feel more in control of our situation, but still there was always that fear at the back of my mind that the worst was going to happen. I couldn’t get excited about anything until I could physically see her and know she was ok.

Due to issues completely unrelated to the heart (breech presentation and slow growth), Roxy was born at 37 weeks via elective C-Section, weighing just 5 pounds 6 ounces.

I was so scared that something was going to go wrong, right up until I saw her face. I needn’t have worried as she was the most perfect, precious, beautiful little baby we ever had seen.

There was a team of doctors at the birth, ready to check she was ok and two minutes after she was born they left the room, happy that she needed no support.

The relief was immense and all my anxieties melted away.

We were extremely lucky that Roxy was a ‘pink tet’ baby, something the doctors wouldn’t know until she was born. This meant she had good oxygen levels.

She was the happiest baby and appeared to be normal, you would never have known she had a poorly little heart. We had regular echocardiograms at the hospital and her heart surgery was scheduled for when she was four months old.

As time got nearer to her operation, the anxiety started to creep back and it was extremely difficult to deal with as a parent. I knew deep down that she was going to be ok, but until she came out of the operation, nothing anyone could say was going to take that worry away. There were days I couldn’t even string a sentence together, the stress was so intense.

Handing over your tiny baby to have their heart stopped and be operated on, is the most unnatural thing in the world. The only way I could get through it was by knowing that it would save her life – she wouldn’t survive without it. As her Mum I had to be strong.

27th October 2020 at 12.30pm Roxy went to theatre. She was blissfully unaware of what was awaiting her, even smiling so brightly at the anaesthetist as she was being put to sleep. This was the hardest, scariest, most terrifying thing I’ve ever had to do, and those next seven hours were the longest of mine and her dad’s lives.

At 7.30pm we received a phone call from the surgeon to say Roxy’s operation went very well. They managed to close the hole in her heart and also save her valve, which means her chance of needing a future operation is reduced.

I cannot tell you how elated we were, eight months of worry and heartache almost disappeared. The hardest part was over, but we still had a rocky few days ahead while Roxy was in PICU.

It turned out Roxy had contracted MRSA during the operation, which caused her lung to weaken. She needed oxygen support for her breathing for a little longer than anticipated and this meant an extra length of time in the intensive care unit.

I can not tell you how inspiring it was to watch the nurses and doctors work in PICU, their skill, knowledge and dedication kept our daughter alive and they did it with such compassion and support for us as parents too. The entire surgical team, PICU staff, cardiac doctors and nurses are just amazing individuals and we will never be able to express how thankful we are for what they have done for us and our daughter.

Roxy was able to be discharged just nine days after her life-saving operation. Our four month old daughter showed us such strength, courage, bravery and resilience, which absolutely blew us away! She had been through more in her short life, than us as her parents had been through in 30+ years.

Roxy is now almost eight months old and it is a year since we first discovered her condition. As a parent it was tough, but I can finally say that I am ok. I lived through the most challenging year of my life and fortunately for us we came out the other side with our perfect happy ending.

We cannot wait to grow as a family and allow Roxy to show off her strength and bravery- our beautiful little heart warrior, Roxy Marie.

Oh… And did I mention the C word?! 2020, the year we faced and conquered CHD during a global pandemic!

Find our more about Tetralogy of Fallot here.