<div>I’ve written this on behalf of Ivanna’s parents, Shannon and Jack. Over the past couple of weeks, since receiving the news, they’ve been trying to plan the sale of Ivanna’s home and explore ways to manage it on their own. However, with time working against them, they’ve realised that it simply isn’t possible to do it without help. Here’s her story..
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<div>Our brave little girl, Ivanna, is just 4 years old and living every parent’s worst nightmare, yet she greets each day with courage and a smile.
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<div>She was born with a complex and severe form of congenital heart disease hypoplastic right heart and heterotaxy syndrome, including:
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<div>Right atrial isomerism
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<div>Bilateral SVCs
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<div>Total anomalous pulmonary venous drainage (TAPVD)
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<div>Complete atrioventricular septal defect
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<div>Common AV valve with regurgitation
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<div>Congenitally corrected transposition of the great arteries (CCTGA)
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<div>Pulmonary atresia
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<div>Right-sided aortic arch
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<div>Patent ductus arteriosus
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<div>Situs inversus
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<div>Asplenia
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<div>In simple terms, the structures of Ivanna’s heart are mixed up, and her veins and arteries connect abnormally — meaning her heart cannot pump blood and oxygen properly.
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<div>Despite everything she faces, Ivanna greets every day with courage and a smile. She loves colouring, watching cartoons, and being around other children — but her health means she often has to sit and watch from the sidelines. Even the simplest activities, like walking or playing in the park, leave her breathless and blue-lipped.
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<div>So far, Ivanna has already undergone major open-heart surgeries, including bilateral Glenn shunts, pulmonary artery reconstruction, and TAPVD repair. These were essential, life-saving operations, but they were never the final stage.
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<div>Her oxygen saturations sit around 70–75%, far below the normal range of 95–100%, which affects her every single day. Unfortunately, her case is so severe that she has been classed as a single-ventricle child, and her surgical options in the UK are limited.
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<div>Here in the NHS, Ivanna has been placed on what’s known as a single ventricle pathway, which would ultimately lead to the Fontan procedure — a palliative operation that creates a single-ventricle circulation. While this can sustain life, it is not a true repair and carries significant lifelong complications. Ivanna is also high risk for the Fontan due to her complex anatomy.
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<div>The NHS timeframes for surgical planning are not aligning with the urgency and complexity of Ivanna’s case, and we are now at risk of losing her surgical window for a potential repair.
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<div>Following failings from our current care team in progressing with any form of treatment plan, we are now in the process of transferring Ivanna’s care to Great Ormond Street Hospital (GOSH) for further evaluation and management.
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<div>Refusing to accept that Ivanna cannot be repaired, we sought opinions from the world’s leading cardiac experts — the Biventricular Repair Program at Boston Children’s Hospital. Following a global conference, the Boston team believe there is a pathway for Ivanna to avoid the single-ventricle route and instead pursue a biventricular or 1.5 ventricle repair.
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<div>This highly complex surgery would involve multiple intricate repairs to Ivanna’s heart defects, requiring an exceptionally skilled and experienced surgical team. Boston Children’s Hospital is one of the few centres in the world with the expertise and success rates for such specialised procedures.
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<div>Boston have expressed concern about Ivanna proceeding with a Fontan, as they are concerned about the outcome given her anatomy and investigatory findings.
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<div>Getting Ivanna to America requires significant funding. Boston have provided a financial estimate of $333,000 (around £250,000) to cover surgery, hospital care, travel, and essential treatment.
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<div>The funds raised will go directly toward Ivanna’s medical treatment, hospital stay, travel costs, and post-operative recovery. Any remaining funds will support her ongoing cardiac care.
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<div>Time is everything right now. Every day we wait, Ivanna’s window for this life-saving repair gets smaller. Please, if you can, help us give her the chance she deserves — to run, play, go to school, and live a full life with the healthy heart every child should have.
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<div>We are endlessly grateful for your kindness, support, and generosity.
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<div>From the bottom of our hearts,
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<div>Ivanna’s Mum and Dad
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