Yazmin as a baby
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Tiny Tickers is going from strength to strength in 2017. We have developed and grown across all areas of our work - and are very, very grateful to incredible supporters like you, who have made this happen
5,000 babies are born annually with a heart defect, but over 1,000 of them are sent home from UK hospitals every year with a serious undiagnosed defect. Tiny Tickers exists to improve the early detection and care for these babies – giving them a better start in life.
In the last few months we have rolled our training out to Wales, where we provided expert practical support in 17 hospitals, training 130 sonographers. This means that in the coming year, 33,500 pregnant women will be scanned by a better trained sonographer, and 260 babies with congenital heart defects (CHD) are more likely to be identified, and their treatment started as soon as possible. Our projects will greatly increase their chances of fighting their condition and avoiding any long-term side effects of heart failure, including brain damage.
Over March and April 2017, we are training in every hospital in Northern Ireland beofre moving to the West Midlands.
Raising awareness of heart health in babies is a key area of our work. We have two central awareness messages – the first aims to educate parents-to-be about the importance of the 20-week pregnancy scan in detecting heart conditions; and the second teaches health professionals and new parents about the possible signs of undiagnosed heart defects in new-borns.
Following a successful pilot last summer, we will continue to contact GP surgeries as well as other medical groups, meaning that information about heart conditions in babies can be accessed in waiting rooms nationwide. This is part of our two major campaigns- Think 20 – helping professionals and parents know what to look for at the 20-week scan; and Think heart – knowing the sign and symptoms of heart problems in a new born baby.
This is why your support is so importnat:
Shontele, Yazmin’s mum wishes she knew the signs, she says had she realised she would have been able to help Yazmin earlier.
Yazmin was born with Coarctation of the Aorta – a serious heart defect which was not detected until she went into heart failure. Here her mum, Shontele, tells their story.
After birth, Yazmin had low glucose levels and jaundice. Doctors said it was because she wasn’t feeding well. I was breast feeding and noticed she was working hard, constantly falling asleep and wanting little and often. These are common signs of CHD, but I had no idea. If only I had known, then I would have been much more persistent that something just wasn’t right.
Signs of Heart Failure
Yazmin’s feeding continued to be an issue and I changed to bottle feeding because I was paranoid my milk flow was the problem. It made no difference – she still worked hard during feeding and slept all the time.
After a very bad night with Yazmin in September, we called the doctor first thing and got an appointment straight away.
As we were about to leave the GPs’ surgery, Yazmin turned blue. The doctor called an ambulance and gave her oxygen while we waited. The ambulance journey felt like a life-time. All I remember was the paramedic saying she had no SATS. Yazmin was grunting and very shallow breathing by this point. By the time we arrived at the children’s A & E, she had completely collapsed
In a blur doctors told us that our daughter was in heart failure. She had a Coarctation of the Aorta and had to be ventilated while she was sedated. We were very lucky and had only just got there in time.
Yazmin needed open heart surgery at just 15 days old.
The surgery went well but the next 48 hrs were critical. We just hoped Yazmin would pull through without any major setbacks. Thankfully she did really well. 24 hours after surgery I could have a lovely cuddle with her! I was so scared of hurting her but the nurse assured me that a mummy cuddle is the best way to heal!
A few more days passed and Yazmin went from strength to strength.
Yazmin has recovered well and is now a happy four-year-old who still has ongoing checks.
We’re so proud of our heart warrior considering what her little body had to endure. I am so thankful to the nurses and doctors who saved her life and who continue to see her progress.
Heart conditions are the most common and deadly birth defect in babies – responsible for 1 in every 13 infant deaths. Tiny Tickers is a small charity but our work is hugely practical. Your support has allowed us to transform the breadth and scope of our work and we are extremely grateful. Thank you.
Please visit our website www.tinytickers.org for more details.
Yazmin now, a happy 4 year old