Daisy’s multiple heart defects were detected by a trial pulse oximetry test, soon after she was born. Despite an incredibly brave fight, she tragically passed away in her parents’ arms when she was three months old. Her mum, Emma, shares her story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Our beautiful Daisy was born on the 19th of June 2023, weighing 8lbs 2oz. The happiness she bought us, even before she was born, was more than I can truly express. She was always a feisty little kicker. We knew she would have strength like no other.
Daisy’s heart defects were not picked up during my pregnancy. Everything seemed to show her as being so healthy. Yet, hours after she was born, a trial pulse oximetry test was offered. It was this test that made time stand still, but equally give us time that would end up being the most precious to us.
The machine rang an alarm, and I remember the nurse retesting because she couldn’t quite believe it herself. Eventually, Daisy was rushed away from me with her dad to have tests.
Hours went by, and it was established Daisy had heart defects, but the severity of the situation was unknown. Daisy was transferred to another hospital. After cardiologists and so many people worked on her, we learned that she had four heart defects. These were: double outlet right ventricle (DORV), transposition of the great arteries (TGA), a large VSD (hole in the heart) and dysplastic valves.
I can’t even begin to tell you how her dad and I processed this; I still don’t know if we have. What I do know is that we put aside trauma responses at this point and did whatever we had to do to support our precious girl.
We learned quickly that a lot of babies were coming in to have surgery and going home all within three weeks… yet the hospital officially became home for us. We knew she was so poorly, as we went between two wards constantly. These two units became family for Daisy and for ourselves. We could not of asked for better teams around us. Everyone adored Daisy and the love and strength she went on to show everyone at such a young age was incredible.
She truly was remarkable. Through all the pain, the CPAP (continuous positive airway pressure – which she hated), the injections, the scans… she still smiled. Yet, she still screamed at the nurses to let them know if she was annoyed. She was fighting for her life and we couldn’t have been prouder of her.
Sadly for Daisy, her little poorly heart just couldn’t catch a break. Options were so limited, and eventually her lungs and brain were affected. She suffered seizures and strokes, and at first she still shined through it all, but sadly after a night of over 20 seizures, my beautiful girl showed us that she could not fight anymore. And we would have never asked any more of her….
It was time to get our precious girl home. After big meetings, where everyone professionally agreed no more could be done for her, we took her home. We spent two precious days with family at home. All singing songs and pouring her with love. Even though she wasn’t awake, I knew she could feel us all with her.
Daisy held on for two whole days until, on September the 10th at around 3 am, she took her last breath in mine and her daddy’s arms. A moment that will truly haunt me forever, yet at the same time I wouldn’t have had it any other way.
Although Daisy is not with us, she leaves a huge legacy. I have been advocating for pulse oximetry tests for all babies born in all hospitals. I have managed to make it on to news channels to spread awareness, and I will continue to do so.
Daisy was so special, she taught everyone who met her so much in her three months and she will live on through us always.
I would do it all again just to be with her.
Emma campaigns passionately for mandatory pulse oximetry screening for all newborns. See her ITV feature here.
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