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Confessions of a Heart Mum

2 CommentsMonday, 10 June 2019  |  Admin

Back on the virtual soapbox!

Confessions of a heart mum on the recommendation not to offer mandatory new born screening for heart conditions.

It's been a while since I've blogged with one thing and another, it seems life got in the way. (Along with juggling two of us working, two children under 5, sleep deprivation.) Now, I was wondering what to write about with my big come back blog when I stumbled across something on my news feed that made me instantly get up on my virtual soap box. Before I go into that for those who haven't read my blogs before then I will quickly explain when I had my first son nearly five years ago now he was born with an undiagnosed congenital heart condition (CHD) called Tetralogy of Fallot.

At 6 months old he went down to Great Ormond Street Hospital to have life saving open heart surgery. Though it might not seem it, we were the lucky ones. After having some complications myself we had to stay in hospital. During the first 12 hours my newborn son began to have dusky episodes where he would turn purple, he was admitted to NICU and was soon fighting for his life. 9 days later we came home, and five years on he is starting school in September, has just achieved his first gymnastics badge and attends swimming every week. He is a happy and healthy little boy without any restrictions or medication. We attend annual appointments with the cardiologist and he will have to be monitored for the rest of his life and possible have more surgeries. It could have been very different. The reason I'm telling you this is because 1000 babies are sent home from hospital with an undiagnosed heart condition. Currently, there is no test to diagnose this and it is putting baby's lives in danger. There is a test that can be done using a Pulse Oximetry Machine it doesn't hurt the baby, it is quick and can be done as part of the mandatory new born tests. It is done by measuring the baby’s oxygen saturation levels by sticking a small plaster to their toe which is linked to the machine. It could save lives. But currently this isn't offered routinely.

I saw on my newsfeed that the UK National Screening Committee have launched a public consultation to recommend that this test is not mandatory and that it will be down to the individual NHS Trust to decide whether they will offer the test. This will mean it will become a postcode lottery to whether your baby receives this or not and down to the hard work of charities such as Tiny Tickers who aim to put these machines in every hospital and make the test available. It makes me so angry as a heart parent who has seen, experienced and is living with the first hand knowledge raising a heart child they feel they can put thousands of babies lives at risk. It is one test and it is as simple as being able to save a baby's life. So many have died from being discharged from hospital seemingly healthy but in fact have had a life threatening heart condition which has been fatal. This should not be allowed to continue. If we had been discharged what would have happened? Would we have noticed the dusky episodes? Would we have known the signs of heart failure in our newborn? Would we have got him help in time? Would I be sitting here now watching him play with his brother? It scares me to think about this when I know it could be prevented. We live in such a medically advanced age where we have made such strides and improved our life expectancy and quality of life so it baffles me when we are still allowing newborn babies to go untested for heart conditions.

Every year when I'm sitting in the heart clinic nervously awaiting my son's annual check up I think back to how lucky we are. How much he has achieved, but for every story like mine there is also one that isn't as lucky. It shouldn't be down to where you live which dictates the care and chances your newborn will receive. I don't believe anyone part of the UK National Screening Committee are heart parents as if they were they would know how dangerous it is to recommend this to not be a mandatory test. Is it cost? Is that why we aren't making this a mandatory newborn test? Training, perhaps? It perplexes me that they can recommend that it is mandatory which to me makes it sound like it isn't needed. Tell that to the parents who have lost children, whose children were sent home with a life threatening condition which would have been detected. One baby's life is not worth more than another's and it shouldn't be down to the area you live in to get the care your newborn needs and deserves.

My son's heart condition wasn't picked up during pregnancy, but it's a miracle it was detected when we were still in hospital. That shouldn't be a luxury, that should be the norm so that the number of babies who are sent home decreases or is eliminated all together. So that every parent can watch there heart child learn to swim, to take part in their sports day and to be able to put them to bed every night. This test could help so many babies have the quality of life my son does. It could save them. But if the recommendation goes ahead then still thousands of baby's are being put a risk. Looking back as a first time parent I would never have known what the signs of heart failure were in a newborn and likely missed them but you can remember them by the Tiny Tickers #ThinkHeart Campaign. Heart Rate - too fast or too slow? Normally 100-160 BPM. Energy - Sleepy? Quiet? Floppy? Falling asleep during a feed? Appearance- Pale, Waxy, Blue, Purple, mottled or grey? Respiration- Breathing too fast or too slow? Normally 40-60 breaths per min. Temperature- Always cold especially hands and feet. I really hope they see sense and make this part of the new born screening process as we have a chance to diminish the thousands of baby’s going home with undetected conditions.

You can have you say on this recommendation by visiting this link; Vicki Cockerill is a NICU/ CHD Mum of two boys, working mum and freelance blogger. Facebook Instagram Twitter LinkedIn Blog