Primrose was diagnosed with a number of heart defects before she was born: hypoplastic right heart syndrome (HRHS), transposition of the great arteries (TGA), coarctation of the aorta, tricuspid atresia and a VSD (hole in the heart). Her mum, Katie, shares her inspiring story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
In late 2021, we found out we were expecting our fourth baby. We were delighted as we had suffered two miscarriages in a row. Our three little boys were excited to have another sibling.
In February 2022, we discovered we were expecting our first little girl (after three boys). We were so excited to be adding glitter into the mix of dinosaurs, and our boys were excited to welcome a baby sister!
On April Fools Day – of all days – we went into our routine 20-week-scan, having no idea that our whole lives would change forever! We had three healthy children, so we thought nothing of what we were about to hear.
I was being scanned by a trainee, and then another sonographer took over to do all the important checks. She went silent, and I just knew something wasn’t right, but I never thought for a minute that there was something seriously wrong. She said she wasn’t seeing enough of our baby’s heart, and would like us to see a consultant.
We came back half an hour later, and that’s when we heard the words, “Your baby has a very serious and complex heart condition.” Our hearts shattered as the consultant explained what he believed to be wrong with our baby’s heart. He referred us to fetal cardiology.
They confirmed that our baby had half a working heart, hypoplastic right heart syndrome (HRHS), transposition of the great arteries (TGA), coarctation of the aorta, tricuspid atresia and a VSD (hole in the heart).
From then on my pregnancy was full of anxiety, worry and not the easiest to enjoy. We had appointments pretty much every week, with scans, all to prepare for our baby’s arrival and to ensure she has the best chance of survival.
In June 2022, I had a MRI scan to get a clearer picture of our baby’s heart. They made a 3D image of her heart – it is an experience I will never forget, and am so thankful for, as medicine is truly amazing. They put together the 3D heart to see the arteries in her heart, prepare for her surgery and also to creature a better future for CHD.
In August 2022, Primrose made her arrival into the world, fighting and so fierce. She was quickly rushed off to NICU and, at six-days-old, she had her first open-heart surgery, “The Norwood.” I will never forget walking into PICU and seeing her for the first time; nothing ever prepares you for seeing your tiny baby, so fragile, hooked to so many wires and a breathing tube. Every time I talk about it, or see photos, my throat closes up.
She fought incredibly hard and proved to everyone how feisty she is. We brought her home at four-weeks-old and had a few hospital admissions in between, until we were admitted back to hospital for poor weight gain. She had her NG (feeding) tube placed and we remained inpatients until her next surgery.
In January 2023, Primrose struggled with her oxygen levels, and it became apparent she needed help. Her shunt needed to be replaced, so they rushed her to have her next open-heart surgery, “The Glenn” the next day at five-months-old.
Seeing her after her operation was even worse the second time…how is that even possible?! We had bonded with her, watched her grow and her little personality shone through, she was much more aware this time around, and I felt so much guilt that she had to go through it again.
Primrose had a bleed after surgery and a blood clot, but despite all she had been through, she had a smile on her face from the moment she woke up.
Primrose is a happy, thriving baby and we are amazed by her and everything she does! Her big brothers are besotted with her and everyday I wake up thankful she is here and thriving.
I will never forget the sonographer who first spotted there was something wrong with Primrose’s heart; I will never forget her name either. She was so kind, so compassionate and we are so thankful she spotted there was something wrong at 20 weeks.
Primrose is now ten-months-old and thriving – I believe that is because of the early detection and having the best medical teams around her.
Primrose’s favourite thing is to sign for “milk”, she absolutely loves Bluey, she adores her big brothers and we all couldn’t be more proud of the feisty, cheeky and happy girlie she is!
Primrose’s update
Since we shared Primrose’s story, she has since turned three and is doing fantastically well, heart-wise. She is due to have her next open-heart surgery, called the Fontan, sometime next year. We’re feeling very anxious about it, but the plan is to carry it out before she starts school to try to avoid any disruption. We’ll see how she’s doing nearer the time. Despite having only half a working heart, she is doing incredibly well!
It’s been a rollercoaster year. In July 2024, while we were on a family holiday, Primrose became unwell. Since then, she has undergone various investigations, including an MRI, EEG, and genetic testing.
Sadly, we still don’t know what’s going on with our little girl, and it’s absolutely devastating. However, she continues to be resilient and leaves her sparkle wherever she goes. We hope to find answers soon. In the meantime, she has been placed on medication, which has thankfully reduced the Ataxia episodes significantly.
Then, in September 2024, Primrose became unwell again and was diagnosed with appendicitis. She recovered very well after having her appendix removed. It’s been a challenging year for us as a family, but Primrose continues to shine—and keep us on our toes!
As a family, we try to make as many memories as possible by going on holidays, enjoying days out, and visiting our local children’s hospice. Primrose has a real zest for life. She loves being outdoors, swimming (she does hydrotherapy at our local hospice), and animals. Her current obsession is monkeys!
With only half a working heart, Primrose is learning her limits—what she can do and when she might need a bit of support. We always follow her lead, and she’ll let us know if she needs help, whether it’s going up the stairs or walking. But she never lets it stop her, and we are so incredibly proud of her!
You must be logged in to post a comment.