Help babies with serious heart conditions

by Tiny Tickers
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Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions

Your continued support is hugely appreciated by ourselves, and the families of all babies with congenital heart defects. 

The money you have donated will be used to support our vital programmes, working to improve detection rates, care and treatment of congenital heart defects in babies. Although great strides have been made in detecting heart problems, the national detection rate still only sits at 47%, so there is far more that needs to be done. Sadly, heart defects are still one of the biggest killers in babies under 1, being responsible for 1 in 13 infant deaths. We are determined to improve this statistic.

We have also welcomed a new Head of Training, Anne Rhodes, back in January. As a specialist sonographer with a focus on fetal cardiac scanning, Anne is responsible for overseeing our core activity of training sonographers who deliver antenatal screening. We're delighted with the amount of training we've been abe to provide and we've enjoyed excellent feedback from the hundreds of dedicated and passionate sonographers that we've met around the UK. We will be training our 1000th sonographer in June this year which is a fantastic achievement for such a small charity. 

Thank you for your generous support.

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Ivy in hospital
Ivy in hospital

Babies born with undetected heart defects will often fall into the early stages of heart failure before anyone knows how seriously ill they are. This significantly impacts their long-term quality of life.

Last December two-week-old Ivy was rushed to hospital after refusing to feed for twenty-four hours. Her parents had known something wasn’t right soon after her birth. Despite voicing their concerns to numerous health professionals, it wasn’t until Ivy went into heart failure that she received a diagnosis of Congenital Heart Disease (CHD). After spending her first Christmas in hospital awaiting open heart surgery, Ivy finally had her operation at the beginning of January. Luckily, she pulled through and is now a happy, healthy baby on the run up to her first birthday. But her story could have easily ended in tragedy.

Ivy’s mum, Sam, knows how lucky they are to still have her – but if her heart condition had been detected during Sam’s pregnancy, Ivy would have received life-saving treatment as soon as she was born. When CHD is detected during pregnancy, babies get treatment from the first possible moment.  Prenatal detection also means parents-to-be like Sam get the support they need to prepare them for the future. It also leads to fewer dangerous and costly emergency admissions to hospital. 

As the only national charity working to improve early detection rates of CHD in babies, Tiny Tickers improves the outcomes for babies with heart conditions in the following ways:

  • We increase prenatal detection rates (the only UK charity focused on this) for example through specialist training of sonographers
  • We campaign for and place pulse oximetry machines into maternity units that can identify heart or respiratory issues in babies quickly, easily and inexpensively
  • We provide a safety net for babies sent home with an undetected heart defect by increasing awareness of the signs of early heart failure in babies with our Think HEART campaign
  • We support the families of babies with CHD. CHD kills more babies than any other congenital condition in the UK, but people know less about it than Down’s syndrome, cleft lip and spina bifida. Without this prior knowledge, families dealing with a diagnosis can feel even more alone
  • We lobby and influence to improve detection rates within the NHS and representing parents and babies on a number of health boards.
Ivy now
Ivy now
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Tiny Tickers continues to go from strength to strength in 2017.  We have developed and grown across all areas of our work - and are very, very grateful to our incredible supporters who have made this happen

Every two hours a baby is born  with a heart defect. Tiny Tickers exists to improve the early detection and care for these babies, giving them a better start in life.

Every year 1,000 babies leave hospital with their heart defect undetected, putting their lives in grave danger.

Babies born with serious heart problems are at significant risk of disability or even death if not diagnosed before or very soon after birth. Tiny Tickers is dedicated to the early detection of heart defects in babies; our sonographer training has helped doubled detection rates at the 20-week scan, but not every condition will or can always be diagnosed -“ so we are providing another way to detect heart defects - by  placing pulse oximetry machines in maternity wards.

Pulse Oximetry testing helps to detect heart defects by measuring oxygen levels (oxygen saturation) in the blood. It uses a light sensor to assess the level of oxygen in the baby's blood. This test takes a few minutes at no discomfort to the baby. Not every baby will be born displaying signs and symptoms and without this machine serious defects could go undetected.

Tiny Tickers wants Pulse Oximetry testing to be part of all new-born tests – so we are making this happen.

Tiny Tickers are piloting pulse oximetry placements in maternity wards across the region of Yorkshire and the Humber  giving pulse oximetry machines to all local hospitals that need them. Initial interest has been high. So far, we have successfully raised £15,000 to fund the placement of the first 20 machines (each machine costs £750) and will look to publicly launch this campaign in the region in November 2017. At the end of this pilot we will then look to expand this UK wide, enough local corporate and community fundraising to support local hospitals.

This project is widely endorsed, Dr E Brown, Lead Clinician, Yorkshire and Humber Congenital Heart Disease Network has said:

"Despite advances in fetal diagnosis of congenital heart disease there are still a significant number of babies with severe problems which are not detected before delivery. Checking oxygen saturations in new-borns not only offers another opportunity to identify these babies before they become seriously unwell but has also been shown to detect other problems such as infections which can therefore be treated more successfully.  We really welcome this initiative from Tiny Tickers which will undoubtedly save lives."

Nicola, Mum of Tom, knows only to well how important a pulse oximetry machine is; if Tom hadn't been tested, his heart condition may not have been picked up and they may have  a very different story to tell today

"My son, Tom  was born on the 24th November 2015. We had no idea that there was anything wrong with his heart when he was born. The following day he had a routine check by a paediatric doctor who detected a heart murmur- he wasn't concerned and said it would likely resolve by the next day. The paediatrician returned and checked Tom again, this time with a pulse oximeter- his oxygenation was around 80% (levels should be 95-99%). He was immediately transferred to neonatal intensive care. There then followed a very worrying few hours while they tried to establish what was wrong with him. He had transposition of the great arteries (TGA), ventricular septal defect (VSD) and atrial septal defect (ASD). He had to have open heart surgery the following weekwhich luckily was successful. Tom is now a bright, very tall and perfect toddler who will be two in a couple of months.

My husband (Jonathan) and I truly believe that the use of the pulse oximeter saved his life. TGA cases are relatively stable initially until a duct closes and they can then die suddenly. We cannot bear to think what may have happened if we had been allowed to go home on that occasion. Luckily Tom was born in a hospital well equipped to deal with these cases; had he been born in a smaller midwife-led unit we may not have been so lucky".

Thank you to our supporters for helping us raise money so we can launch life-saving projects like this.

 

Identifying CHD at the 20-week scan through training

September also sees the launch of our West Midlands training. Over the next two- three months we will be training over 200 Sonographers and 5 doctors in 15 hospitals across the region. This will benefit the 63,000 pregnancies in the region per year and should ensure the 570 Herat babies born are far likely to be detected earlier.

Awareness raising

Lastly this month we have mailed over 7,000 GP surgeries and 3,000 nurseries, targeting both with our Think 20 and think HEART messages. We ask asking health professionals and nurseries working with babies under one year old to learn the 5 key signs and symptoms of a heart problem - if you'd like to know, these are:

H = Heart rate: Is your baby's heart rate too fast or too slowly - it should normally be 100-160 beats per minute?

E = Energy: Is your baby sleepy, quiet or floppy? Are they too tired to feed, or falling asleep during feeds?

A = Appearance: Is your baby a pale, waxy, dusky, blue, purple, mottled or grey colour?

R = Respiration: Is your baby breathing too fast or too slowly - it should normally be 40-60 breaths per minute?

T = Temperature: Is your baby persistently cold to touch - particularly their hands and feet

Knowing the signs really could save a life.

 

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. 

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Mason image
Mason image

Dear Wonderful supporters,

Thanks to your continued and genrous support- once again Tiny Tickers has been incredibly busy improving prenatal detection rates by providing training and information to sonographers so they are better able to detect heart defects during pregnancy scans.

This quarter we have trained In Northern Ireland, training 90 Sonographers across 13 hospitals benefitting 24,500 babies per year. We are just about to start a West-Midlands training programme.

 We consistently get very positive feedback from sonographers, who truly value the specialist training we can provide.

 "A referral was sent through this week from a sonographer who had recently received training from Tiny Tickers. They had identified a 3 vessel abnormality* in a baby's heart and they were absolutely spot on. It was quite a subtle abnormality that the sonographer probably wouldn't have recognized before having Tiny Tickers' training."

Jan Forster, Consultant Congenital Sonographer, Leeds General Infirmary, March 2016

 We recently received training facilitated by yourselves.  I just wanted to thank them and for this fantastic opportunity.  The foetal heart is an area that causes us concern and we strive to improve, so to receive such specialised training was fantastic.  The girls were fantastic at their job, so patient and wonderful teachers.  We feel very honoured to have had them in our department and they are welcome back any time.”

Catherine, Sonographer April 2017

 

Information provision:

We are very near the completion of two training modules and a sonographer’s tool kit.

Module one is for midwives to understand the benefits of prenatal counselling and how it is important for them to broach this subject with women. Tiny Tickers research has shown that 75% of women know nothing about Congenital Heart Disease (CHD) before their 20-week scan and are therefore totally unprepared.

Module two focuses on types of CHD and what midwives may recognise after the baby is born (tying in with Think HEART, please see below)

Tiny Tickers are working with multiple professional bodies (including midwives) who are with women all through their pregnancy and beyond, helping them to become totally equipped to give information. A sonographer may only see the woman twice during her pregnancy, therefore having Midwives understand and utilise these modules will ensure an improvement the detection rates of CHD

The Sonographer tool kit is a paper based kit summarising the training, offering hits and tips, images of various CHD’s - so sonographers have information at their fingertips, as and when they need it. We did research into the best way to keep sonographers informed and although all the information will be available online, the tool kit is paper based (rather than an app or online) as many sonographers won’t be able to access the internet within a hospital and often need information there and then. The kit will also contain extra resources to share with other sonographers and patients- such as posters, and postcards.

Tiny Tickers also tried to promote the work we do through professional publications, we are just about to have an article published in the Midwives magazine. 

Improving neonatal detection rates

Tiny Tickers continue to campaign for pulse-oximetry machines in hospitals, to date we have successfully placed one machine in Good Hope hospital, Sutton Coldfield. We are currently looking for funding to place more.

Increasing postnatal detection rates

We provide a safety net for the 1,000 babies sent home with an undetected heart defect by increasing awareness of the signs of early heartfailure in babies through our Think HEART campaign.

The Think HEART campaign is a really easy way for parents and health professionals who aren’t cardiac specialists to know the key signs that a baby may have an undiagnosed heart condition.

We piloted a very successful mailing to doctors’ surgeries across the UK, receiving a great level of engagement with over 8,000 pieces of materials requested for use by medical staff and for promoting to patients. This campaign will be repeated again this summer.

In additional to raising awareness within the medical sector we are also now testing a (regional) pilot to child focussed companies such as nurseries, Sure Starts, soft-play centres. We are asking staff to become heart champions by training staff to learn the 5 key signs and symptoms and promoting the campaign to their customers. 

 We’ve were very lucky to be awarded the BBC Lifeline appeal of the month of May and have ensured that our think HEART message is a core part of this appeal.  Please take a moment to watch it

We produced this simple but effective Think HEART video http://www.tinytickers.org/support-info/think-heart/. This has been viewed over 40,000 times.

Lastly we continue to send out Think Heart cards on request.

 

Supporting the families of babies with CHD.

 Family Experience videos

This year we produced eight videos to support families, two of which have been publicised and the rest to be promoted within the next month.

  • Finding Out Your Baby Has a Heart Defect During Pregnancy
  • Finding Out Your Baby Has a Heart Defect After They Are Born
  • Telling Friends and family
  • Living with CHD
  • A sibling’s perspective
  • Preparing for surgery & being in hospital
  • Having more children after having a child with a heart defect
  • Dealing with a baby’s death

In the last two months, these videos have been viewed 5,270 times combined. They are available on our website, YouTube channel and via social media (Facebook).

http://www.tinytickers.org/support-info/family-experience-videos/

 

Parent Facebook Group

We have recently set up a Parents Facebook group which immediately has attracted nearly 300 followers. There is an extremely high level of engagement between the parents, who gain the benefit of a peer support group.

“This group is like a lifeline, being a parent of a Heart baby can be an incredibly scary and lonely time, here I can talk to the other mums and it gives me hope.”  Heart Mum, J

 

Parent Panel

We have recently revised the parent panel – a panel of CHD parents who now provide feedback on current (and future) projects, proactively make contributions to the direction of the charity, and represent Tiny Tickers in the media and their local community.

 

Tiny Tickers continues to grow from strength to strength - and can't thank you enough for supporting us to save babies lives! You are truely brilliant.

 

Jess xx 

Tiny Tickers appeal
Tiny Tickers appeal

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Yazmin as a baby
Yazmin as a baby

Dear wonderful donors

 

You subscribed to email updates from Help babies with congenital heart defects - UK, a project on GlobalGiving.

 

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
Yazmin now, a happy 4 year old
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Tiny Tickers

Location: London - United Kingdom
Website:
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Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$21,290 raised of $25,000 goal
 
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