WHOLEHEARTEDLY LIVING WITH A UNIQUE HEART!
KNOWLEDGE IS POWER - SHINING THE LIGHT ON CHD'S
'The more we talk about a Single Ventricle anatomy heart the closer we will get to finding a cure'
gofundme
Our why...
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We cannot thank Indi's medical team enough who continuously help Indi through her heart challenges and have saved her life! Despite this Indi still lives with one ventricle as people who have HLHS/HRHS can't have a heart correction it can only be adapted. Indi has had 2 one heart surgeries and has 1 more to go which is the big one that sets her up for the long run. Indi's condition can be fixed but not corrected in the uk so her heart has 2 chambers instead of 4 and 1 ventricle instead of 2! She truly is a miracle baby living on earth! Theoretically she has half a working heart.
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This has been life-changing for us as a family! From the knowledge gained on cardiac science to becoming Indi's daily doctors, to navigating trauma and stress from the CICU to settling and accepting and even now embracing our 'new normal'. Our view of how we see life is simple - This is our path and Indi chose us to be her parents - for this we are honored and blessed to cultivate life as a family and make it work in every way that we can! However this diagnosis for Indi means life long care, there is no set path and Indi will have 3+ open heart procedures. At this part of her life she will be seen every 4/6 months this is our new normal and will see how her heart is coping and if any changes in medication or intervention is needed along the way.
Bringing Awareness!
Before indi was conceived we had absolutely no idea that single ventrile individuals existed. We had minimal knowledge on complex congenital heart defects. How has it taken us 3 decades to find this out and to discover an understanding into the world of HLHS and HRHS!?
Bringing awareness to HLHS and HRHS and single ventricle life - the more awareness the better! This condition is like an illusion to the eye - from the outside Indi looks normal but the fight is within, you cannot see her disability which is an adapted heart and daily medication's. The only way to see Indi is unique is when her top is off and her scar is visible to see. The additional knowledge of this condition can bring awareness to treat everyone with kindness, inclusion and bring a love and understanding for diversity through humility.
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The more awareness we have creates a snowball effect of understanding and knowledge to a world little is spoken on. Parents on this journey just like ourselves are some of the strongest, inspiring people we have ever met. The things normal parents take for granted such as walking (many HLHS individuals tire easily due to lower oxygen levels), talking normally (many HLHS individuals have paralyzed vocal cords due to all the pipes post op). Looking at your child without looking too much at their color and if they are going blue or sweaty meaning potential heart failure. Being in a state of fight or flight with havoc on parents nervous systems is mentally challenging and we navigate this daily.
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Bringing a sense of understanding to the topic may bring about more worldwide understanding too. Many countries do not treat indie heart condition at all due to its complex nature, lack of knowledge and lack of experts!
We now live in a society where everything has to be made visible for people to 'understand'. However, many people have challenges each and everyday which appear only within. Let's create a kind loving life for us all - people with CHD's look completely 'normal' on the outside although they have battled many obstacles, are survivors of open heart surgery and are on a life long treatment plan of medication and medical care!
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We would appreciate if you can spread indi's story far and wide so that we can try and create a society where we see truth and vulnerability as a norm rather than a society where sharing health conditions or disability is seen as a victim mindset or weakness. Lets normalize support, love and sharing our diversity, battles and health conditions to learn from one another rather than seeing it as taboo and hiding through life feeling guilty if you need a hug as a parent or someone to talk to as a CHD'er. I just want to remind you...YOU ARE AMAZING! Your differences are your super power. You are full of wisdom, wonder and unique stories and lets all pray that medical science in children's cardiac health caches up to being able to offer a miraculous cure to the kind of heart defects Indi and other babies and children have to go through throughout their lives.
Navigating family life - alleviating emotional and financial stress and allowing the pursuit of creative projects for heart families and inpatients.
Everyday we speak to a huge amount of people about indi and they are amazed by indi's unique story. They tell us it's inspirational and that our outlook on life is mind-blowingly positive. People ask us how to help and support us or if there is a way to follow along on indis journey as living with half a heart is a miracle! We felt like gofundme and indis website was the most tangible way to share our story, spread awareness and let you into our lives to send prayers and keep in touch and to help us as a family. We can’t thank you all enough for the outpouring of love and support during this transition and journey in our lives.
This go fund me will alleviate alot of financial pressure off our family as our life has been turned upside down and to try to see the joy and enjoy family life through experiences and adventures together to the fullest. We will do whatever we can to be there for every appointment, surgery, doctors check up, echo, CT scan, MRI and hospital stay we will also be her full time carer alongside creative projects to bring awareness to HLHS and CHD's which is now embedded into our daily lives. Indi needs constant care. She is on daily medication and is watched closely by her cardiologist incase any extra intervention is needed along the way.
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I have 3 degrees including a masters degree and I am a qualified teacher where I trained at st Marys catholic university and taught at many wonderful schools will by choice stay with Indi. Reece indis father has PTSD which stems back from the 2004 tsunami and now the diagnosis and being inpatients on the cicu and nicu and constant hospital check ups on how indi's heart is doing every 4/6 months. I can only describe the sounds, smells, flashbacks myself as horrific and something we continue to heal from which I'm sure other parents also face as a huge challenge. We will be staying with Indi before returning to any work up to indi's 3rd surgery called the Fontan which again indi's heart will be stopped, she will be on a bypass machine and it will be her 3rd open heart surgery. we pray these are the only 3 she needs however many other children with HLHS have had up to 8 open heart surgeries and in some cases heart transplantation, valve repairs and collateral removals to help increase oxygen levels. it is just an unknown for us but with all this uncertainty we want to be in a position of being ready as in the 18months since Indi has been born there is no way we would have been in a financially stable position with the amount of interventions needed.
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Heart babies health is critical when needing medical care so we have an A&E pass to get indi seen quick. When it comes to prepping for her surgeries there are 3 main ones but that is not to say she may not need more as many hlhs individuals have had different surgeries and reasoning for additional hospital stays throughout life. This go fund me will help us feel as if we can fully focus on indianna's health and prep ourselves mentally too to the best we can in any country we travel to.
As our cardiologist said every single day is a blessing live life in the present moment. We planned to live abroad (that was why we chose the name indianna after indianna jones the great explorer) as a family we adore travelling and exploring while teaching Bodhi about new cultures we have a family vision to homeschool our children and show them our world. Regardless of Indi’s condition we still want to create this lifestyle for our kids and make this happen somehow some way. Even though our sweet girl is disabled we want to enable her to never feel unable in any way so giving her the upmost opportunities and experience in life is our vision - just because she has half a heart doesn't mean she's not going to live life to the fullest - she deserves to! We love travelling as a family (Indi and Bodhi's daddy is a 2004 Tsunami survivor) so Thailand will always hold a place in our hearts. Thailand feels as if it is our second home. Having a very complex congenital heart defect means extremely high travel insurance or if Indi needs oxygen on the plane at high altitudes then funds enable her to still fly as we will purchase a tank of oxygen for the flights along with the best health insurance for her incase of an emergency stay or procedure in hospital.
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Giving back to
Great Ormond Street Hospital for sick children - Bear ward and Flamingo ward
We can't thank Great Ormond street hospital enough! We appreciate their surgeons, level of care and expertise from the bottom of our hearts. We have witnessed this first hand and see the amazing things these heros are doing each and everyday.
Giving back to who saved and continues to save our daughter's life - a percentage of the funds will go to Great Ormond Street Hospital for sick children. They are real life heros we have honestly never seen anything so amazing.
However my main support to the hospital would be a vision I have to help parents going through trauma and stress to strengthen their faith and provide love and hope while they go through such an intense moment in time - this go fund me will also help invest into that project specifically for the parents of sick children who are born with a single ventricle heart.
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We will never truly know the battles and mental strength parents of sick heart children have to deal with each and every day...and although we may not understand we can empathise and acknowledge them fully. They are as much a part of their child's health journey advocating them along their life journey as the child themselves. somebody once told me 'they won't remember all of this but you will and you are doing amazing!' I praise and send love to all of you out there going through a heart journey with your heart warriors.
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future health treatments, healthcare and being readily available to provide indi medical care, treatment or cure
This go fund me will allow us to have the funds readily available for Indi’s treatment when needed and wherever that may be globally. That could be from a clinical trial that she could be called fowards for or as big as a heart transplant, or extra surgeries to different treatment plans or trials - the uncertainty comes with HLHS as it is such a new condition and there is still no cure. It can also help to go towards eastern medicines for indi such as chiropractors and holistic medicine to even educational tutors while growing up- we will try to do everything and anything to help our sweet girl. Single ventricle individuals do struggle with trauma, pain, ptsd and tend to have other health conditions such as paralysed vocal cords, scoliosis and slower learning due to lower saturations of oxygen in the brain.
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Once indi has her fontan we then live in faith that the right side of her heart is strong and leads her into adulthood. Life expectancy for a single vetricle individual is around their 40's. However we are luckily living in a time where science and medicene and technology are advancing very fast - we just need to be in a position to give her these treatments when they become available or be in a position as her parents to get her on a transplant list in a country that allows single ventricle individuals to have one as in the UK they are not readily eligible.
Due to the UK not allowing all single ventricle individuals to have the chance at transplantation in the event of heart failure we as Indianna's parents have branched out to find different parts of the world that do and have educated ourselves intensely on HLHS and the medical procedures. The USA does allow SV patients for heart transplantation as you know along with a few other countries but it is in the millions $.
We have now got to wait in hope that a cure is found. Dr Mark D. Rodefeld, M.D. in the USA has a miracle treatment and is extremely sure it will work called a blood pump. It is placed into a failing heart to allow patients to drastically lengthen their life. The pump would create two ventricle circulation in Fontan patients extending their life and putting off or even eliminating the need for a heart transplant. It is currently in animal trials for 2023-2024 and then Dr Mark Rodefeld will need to apply for a grant again to begin the human trials! This treatment is needed NOW! So the sooner the grant is accepted the better therefore we will be donating a % of the money to help this go ahead! Indi is not eligible for a heart transplant in the UK on the nhs so a main % of this go fund me will be saved for Indi to have eligibility to a cure or treatment such as the blood pump in a different country that accepts single ventricle patients. We want every single inch of hope to give her longevity in the event of heart failure. We believe that the blood pump is the cure - it works just as nature does and creates a 2 way circulation...the cure is also held in a part of america which makes us truly believe this is destined to work and save many individuals with a single ventricle...it is in Indiana (of course it had to be in the state with the name of our daughter!) synchronicity at its finest!
Heart works in Rochester USA are also working with stem cell treatment in the labs as I write this! They are hoping to grow ventricles out of human stem cell! THIS will be revolutionary. THIS could create indi to have her own cells in a lab readily available to use. This in my eyes is another amazing position to be in being able to allow Indi the opportunity when they arise.
