Amber’s Story

Amber, 15yrs, has Pulmonary Atresia –  a serious and non-correctable heart condition.  She has undergone a series of open heart surgeries but will never be cured. Amber has struggled at school and has been absent for long periods.  She was recently awarded a ‘Brave Hearts – My Heart Award’ from the charity Little Hearts Matter for her increased confidence in managing her heart condition at school.  After a year absent from school Amber returned to school, sat an exam and achieved the highest score in the class.

Zoe, pictured above with Amber, talks in her own words:

Just after Amber was born a paediatric nurse noticed that Amber was cyanotic and arranged a video conference call with the Royal Brompton Hospital. Amber was transferred there later that day and we the following day we were then given the diagnosis of Pulmonary Atresia with intact ventricular septum.

At first we were confused as we had absolutely no idea of congenital heart conditions.  I naïvely thought heart disease was for the elderly or people who had not taken care of their diet and lifestyle choices. I also felt like I was visiting the nurses baby and getting in the way a lot…. Although the nurses were amazing and encouraged us to take care of our precious baby.

As Amber grew up we didn’t have many resources to assist us with her milestones – I can’t remember much that related to what we were experiencing. Amber seemed to struggle in the cold, struggle in the heat and always appeared to be tired. When Amber was about 5 we discovered Little Hearts Matter and for me that changed everything. I no longer felt quite so isolated and found the resources to be really encouraging.

Amber’s biggest hurdle growing up was getting grown ups to listen to her especially at primary school. Amber would tire quickly and would need regular rest breaks but the adults would try and push her to try harder. Amber needed her pushchair until she was about 9 and strangers would think nothing of telling Amber to get out of her pushchair and walk!

Amber used to be in denial of having CHD and just wanted to be treated as normal. As she reached her early teens she had a pretty rotten year and was really struggling with tiredness, so much so that she ended up having a whole school year off.

During this period Amber decided to give Little Hearts Matters PGL weekend a go.  It was the best thing she ever did. She met other children who could relate to her and the lessons about using spoons of energy to explain her tiredness was groundbreaking for her.  Lance and I really noticed a boost of confidence from her and she also learnt a lot about her condition which has helped her communicate with the teachers.

One of the biggest hurdles has been fighting the very strict school uniform rules. Her school insist that the girls wear thick opaque tights with their skirts and a tie and blazer all year round. Amber had to have a week off in year 8 while the school had to decide if she could go in wearing long socks!!!

Amber has one true friend that she’s known since pre-school and this friend has adapted her own life so that she can be 100% in tune with Amber including suffering late marks at school so that she can always support Amber.

Lance and I are exceptionally proud of Amber just for getting out of bed every day! She has grown into an intelligent, sensible, trustworthy, polite and mature young lady with a fantastic sense of humour. We were extra proud of Amber for continuing to study hard during her year off school and achieving the highest mark in class when she returned to school.

Amber worked in Primark for her work experience and although she could only manage a 3 day week, the store were so impressed by her work ethic and common sense that they have offered her work there when she is 16. She recently got accepted as a prefect at school which is testament to her hard work and dedication despite the hurdles she experiences.

Amber has known her career path since a young 8 year old and is working tirelessly to get the grades she needs. She’s hoping to go to university and eventually to run a catering business. She hasn’t fine tuned all the details yet.

Our wish is that CHD is taken a bit more seriously by governing bodies. A blue badge would have been a lifesaver when Amber was under 10. Not so much for the convenience of where to park, but for the larger parking bays because most of the winter Amber would have to put a full ski suit on to go out.

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    Antenatal Support

    Many families first find Little Hearts Matter just after they have learnt that their unborn baby has half a working heart. The Little Hearts Matter team are here to help make any diagnosis and treatment information easier to understand and will always try to help new families cope with the emotional choices needed during pregnancy. Following a call to the support line you will be linked with a member of the antenatal support team.

    Suzie has been with the charity since its inception, working in the LHM office for over 20 years.. She used to be a Congenital Cardiac Specialist Nurse so will listen to all callers’ concerns and work to help them understand what their medical team have told them, especially following a new diagnosis or treatment plan. Although she is unable to give individual medical advice she will help a caller to draw up a list of questions for their own medical team. She also works to help families to access support for a child in school or apply for benefits and she works to give a general overview of life with a congenital heart condition and the support a child or family may need at any stage of their journey.

    For help with an antenatal diagnosis of half a working heart, call 0121 455 8982 ❤️
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