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Our Little Heart Warrior (UPDATED PLEASE SCROLL DOWN TO READ OUR FULL STORY)
When Harlie was 8 weeks old we took her for her first immunisations where they checked her over and unfortunately the doctors found her to have a severe heart murmur so upon further tests and an echocardiogram led to us finding out that she has something called ‘VSD’ ventricular septal defect. Which means she has holes in her heart… With it being such a huge and scary thing to hear for our babygirl we also didn’t realise how common it was in newborn babies, we also didn’t know it is something some people live with and may not even know unless it was looked for. When we first found out we was told she had 3/4 holes in her heart chamber and her left side of her heart is severely dilated making it very hard for Harlie to gain weight she excessive sweats & has feeding difficulties , she is still very much our diddy little girl at the age of 1. However after going back numerous times for echocardiograms with the amazing Evelina team we got news they felt they were closing on their own which was such a big relief. Fast forward on 3 months we attended another echocardiogram which we was then told she only has the one larger hole that won’t be able to close alone , and her left side of her heart is still very dilated … this means our little Harlie is in need of Open Heart Surgery. Few weeks down the line we had a phonecall with a surgeon that offered us a procedure less invasive and a strong possibility this could close the hole without OHS. This then lead to us going to a different hospital with different paediatricians and to meet a surgeon that would be doing the ‘device closure’ after spending a whole day up for what we thought was a ‘pre op’ to be called in talking to the surgeon his words were… ‘I will not be going ahead with her closure as she is growing nice and healthy, we will see how her respiratory system reacts to winter before going ahead’ … baring in mind our girl has a huge VSD and a very dilated left side of her heart… so he’s saying he wants to see it she gets worse before doing anything.. doesn’t sit right with us but he’s a surgeon he knows what he’s doing surely?? Turns out 3 months later at our next echocardiogram at Margate hospital back with our team from Evelina.. this was not the case her closure should have gone ahead. Now we are back to the beginning and our baby girl is having open heart surgery nearer the end of September we cannot thank the team at Evelina enough for picking up on this and making sure we get the support we need for the hard time we have been through being mislead and give misinformation, we would like to give back to them, because without their support and pushing for Harlie’s surgery we could have been in such a horrible situation come winter time!!! All we ask is if you could donate just £1 to our charity page/link all donations to go towards the amazing ‘Evelina London Children’s Hospital’ these amazing people have put our mind at ease and spoken through everything we are yet to face, they have completed all Harlies echocardiograms and are always at the end of the phone for any questions & of course those amazing surgeons that deal with this procedure daily, we just know Harlie will be in safe hands during her surgery. If you have made it this far in reading what we are raising money for I thank you so much for reading and would love your support us and the amazing team that helps so so many babies and young children!! We are beyond grateful and blessed to be able to deal with such amazing nurses/ paediatricians / surgeons from Evelina hospital and as we continue our amazing journey with our little heart warrior and get through her surgery and work with the most wonderful team, I will be continuing 10,000 steps a day for this amazing hospital charity because they deserve these donations they deserve the best for all they do! All money is sent straight to the charity and believe me they are so so grateful for everyone that has already donated. Just £1 can change many many babies lives that are going through surgery for many different reasons and being treating by the most wonderful team of nurses&doctors at Evelina , the safest and most caring hands. We would love and appreciate if you could help us support and donate as little as £1 to ‘Evelina Children’s Hospital’ ❤️ Thank you for reading our story snd supporting our little super star, our heart warrior.. Harlie - Rose J
When Harlie was 8 weeks old we took her for her first immunisations where they checked her over and unfortunately the doctors found her to have a severe heart murmur so upon further tests and an echocardiogram led to us finding out that she has something called ‘VSD’ ventricular septal defect. Which means she has holes in her heart… With it being such a huge and scary thing to hear for our babygirl we also didn’t realise how common it was in newborn babies, we also didn’t know it is something some people live with and may not even know unless it was looked for. When we first found out we was told she had 3/4 holes in her heart chamber and her left side of her heart is severely dilated making it very hard for Harlie to gain weight she excessive sweats & has feeding difficulties , she is still very much our diddy little girl at the age of 1. However after going back numerous times for echocardiograms with the amazing Evelina team we got news they felt they were closing on their own which was such a big relief. Fast forward on 3 months we attended another echocardiogram which we was then told she only has the one larger hole that won’t be able to close alone , and her left side of her heart is still very dilated … this means our little Harlie is in need of Open Heart Surgery. Few weeks down the line we had a phonecall with a surgeon that offered us a procedure less invasive and a strong possibility this could close the hole without OHS. This then lead to us going to a different hospital with different paediatricians and to meet a surgeon that would be doing the ‘device closure’ after spending a whole day up for what we thought was a ‘pre op’ to be called in talking to the surgeon his words were… ‘I will not be going ahead with her closure as she is growing nice and healthy, we will see how her respiratory system reacts to winter before going ahead’ … baring in mind our girl has a huge VSD and a very dilated left side of her heart… so he’s saying he wants to see it she gets worse before doing anything.. doesn’t sit right with us but he’s a surgeon he knows what he’s doing surely?? Turns out 3 months later at our next echocardiogram at Margate hospital back with our team from Evelina.. this was not the case her closure should have gone ahead. Now we are back to the beginning and our baby girl is having open heart surgery nearer the end of September we cannot thank the team at Evelina enough for picking up on this and making sure we get the support we need for the hard time we have been through being mislead and give misinformation, we would like to give back to them, because without their support and pushing for Harlie’s surgery we could have been in such a horrible situation come winter time!!! All we ask is if you could donate just £1 to our charity page/link all donations to go towards the amazing ‘Evelina London Children’s Hospital’ these amazing people have put our mind at ease and spoken through everything we are yet to face, they have completed all Harlies echocardiograms and are always at the end of the phone for any questions & of course those amazing surgeons that deal with this procedure daily, we just know Harlie will be in safe hands during her surgery. If you have made it this far in reading what we are raising money for I thank you so much for reading and would love your support us and the amazing team that helps so so many babies and young children!! We are beyond grateful and blessed to be able to deal with such amazing nurses/ paediatricians / surgeons from Evelina hospital and as we continue our amazing journey with our little heart warrior and get through her surgery and work with the most wonderful team, I will be continuing 10,000 steps a day for this amazing hospital charity because they deserve these donations they deserve the best for all they do! All money is sent straight to the charity and believe me they are so so grateful for everyone that has already donated. Just £1 can change many many babies lives that are going through surgery for many different reasons and being treating by the most wonderful team of nurses&doctors at Evelina , the safest and most caring hands. We would love and appreciate if you could help us support and donate as little as £1 to ‘Evelina Children’s Hospital’ ❤️ Thank you for reading our story snd supporting our little super star, our heart warrior.. Harlie - Rose J
Organizer
Shona Baker
Organizer