Below, Natasha, mum to baby Tommy who tragically passed away with an undetected CHD, tells us her views on the test that could save your baby’s life.
If you’re a parent or carer with experience of CHD, we want to know what you think. Is pulse oximetry testing important to you? If so, why?
Where to begin? In 2015 I lost my son Tommy to undiagnosed transposition of the great arteries. After meeting with one of the region’s heart surgeons, we learnt of the pulse oximetry test and he explained to us that it wasn’t currently part of the mandatory newborn tests.
I struggle speaking about my son and I feel my grief is private and not something to be shared. But I challenge myself, because I don’t want another family to go through this trauma. At Tommy’s inquest it was the first time I’d spoken about what happened to him; what me, Andy and our family had lived through that night. I didn’t want Tommy’s story to be anything but an example of how things needed to change and promote the work done into congenital heart disease.
After we lost Tommy I thought the pulse oximetry machines wouldn’t make it any further than my local hospital. We have since managed to bring in the test at our local hospital, which was fantastic but felt like a small step on a very big journey. This consultation is a chance for all us parents to tell the NHS how strongly we believe all newborns should have the test, and I’m happy to add my voice to Tiny Tickers’ calls for the test to be offered to every baby.
Tommy’s death has become so much more than just a tragedy; Tommy is now a reason for positive change, saving other babies’ lives and giving them the chance he never had; to fight for his life. Nothing could honour my son more. I was recently blessed with another son, Albie, and whilst carrying out his pulse oximetry test the midwife told Albie how his big brother was the reason for the test he was having. No medical professional we have come across within our local hospital has ever made this acknowledgement and it really hit me. We did this. Tommy, my partner and I. And whatever it took to push this far we would, no matter how long it took. It is only through the kind doctor’s knowledge of pulse oximetry; Tiny Tickers’ support, and the power of Tommy’s story that has got us to where we are. I can’t thank Jon and the Tiny Tickers team enough for allowing my family and I to be such a huge part of this campaign.
We can never change what happened to Tommy but I really feel, with this initiative, and being allowed as a fam
ily to be such a big part of it, we are leaving a real legacy in his memory. It is a huge honour to know that all UK maternity units could have access to this, thanks to Tommy.
We want to hear your views!
We’ve been overwhelmed by the response we’ve had to our campaign to ensure every newborn baby is offered a pulse oximetry test – the simple, non-invasive test that can help detect potentially life-threatening congenital heart disease.
We want to include your views as part of the Tiny Tickers response to the NHS’s public consultation into whether pulse oximetry testing becomes mandatory (the current recommendation is that it does NOT). You can read more information on the University of Birmingham’s website.
Please comment on our Facebook post and tell us why you think it’s important.