told by her mum Emma and dad Ronnie

 

This is our daughter Daisy. She is the light of our world and we love her dearly.

Daisy was born via a c-section on 19th June 2023. We had no idea she had heart issues. She was very quiet after she was born, and didn’t take to having any milk. She had blue tinged fingernails and was overall slightly tinted blue and red. After 6 hours approx. a nurse came round asking if we would like for her to do a test on Daisy (the pulse oximetry test). She explained it was harmless and wouldn’t hurt her, nor was it compulsory. But that she was trying to push for this test to be done on newborns to try to catch any heart issues. We agreed. It picked up she had low oxygen levels and was whisked away to neonatal intensive care, and then blue lighted to Great Ormond Street Hospital (GOSH) the very same day. This test is not compulsory currently but if it became compulsory it would prevent babies like Daisy from being discharged with unknown heart issues, which could be very dangerous/fatal. We are so grateful for that nurse and this test. Otherwise Daisy would have been discharged with multiple serious heart issues.

At GOSH after testing they diagnosed her heart conditions as:
• Transposition of the Great Arteries (TGA)
• A Ventricular Septal Defect (VSD)
• A  Atrial septal defect (ASD)
• Double outlet right ventricle
• Dysplastic aortic pulmonary valves.

It was explained individually these conditions are serious, together she was a little miracle. There was hope however, that once a bit bigger and stronger she would be able to have an operation.

The three months we spent at GOSH, were something we never imagined. Filled with pain, fear, anxiety, the constant worry of what the next hour or day would bring. It’s like an emotional rollercoaster and you just can’t get off. But some of the staff at GOSH, our consultant, our liaison officer were incredibly supportive and helped us through. Daisy was in the best hands and we knew this. But we were still filled with worry.

She went in for an operation and sadly the consultant said he couldn’t do what he had wanted to. He put in a temporary band on her heart in the hopes this would help for now until she grew bigger. She had to be revived whilst she was in the operation.
Towards her 3 month birthday she had a stroke, which after tests showed to have done minimal damage to her brain, and began having seizures. Not long after that she suffered another stroke and more seizures. Sadly, after tests showed the stroke had caused serious brain damage, we were given the devastating news that no parent wants to hear; that she was palliative.

Thanks to some amazing people at GOSH we were able to get Daisy home that same day. Back where she belongs. Where she spent 32 hours.

I don’t have the words to describe the heart ache, the pain and the loss that losing her brings. Or everything she went through. Even to the end.

I think the awareness we would like to raise from Daisy’s story is that it’s so important that babies are checked at birth using the pulse oximetry test to check for oxygen stats. And that people are aware of the signs of heart issues in babies, like blue tinged nail bases that don’t go away.

It would have dramatically lessened the trauma Daisy and us as her parents went through had Daisy’s congenital heart conditions been picked up before her birth. It would have meant as her mum I could have been better prepared for what was to come, for Daisy to be taken to neonatal care so quickly, and I would have had her c-section at Great Ormond Street enabling us to be right there with her. And for Daisy to instantly access the life saving medicine she desperately needed. Unfortunately for Daisy, for us and for all our loved ones this didn’t happen.

We would also like to raise awareness in her memory for how much these sweet little babies go through in their early life. More than a lifetimes worth. And the plight of all involved. The exemplary care and support they had at GOSH. And how crucial that was in giving Daisy the healthcare she needed and us, her parents, the support we needed. We don’t know where we would have been without Great Ormond Street.

Three months with Daisy is nowhere near long enough for us or Daisy, but we want to keep her story and memory alive.
She deserves that. And any other parents or babies born with heart issues that can gain some kind of understanding, knowledge, or just feel less alone, from Daisy and her story, means her legacy can continue.

But under all of that was simply a baby, so unbelievably loved, that was taken from this world far too soon. We need more research into congenital heart conditions, and what causes them. The best ways to detect them as early as possible and to continue growing the treatment available.

 

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.