Sorayas Recovery from Congenital Heart Disease

After much advice from friends and family we have decided to set up this crowd funder to support our family over the coming months

On Sunday 5th November Soraya started showing signs of a flu type illness. Run down, lethargic with a cough and a high temperature. We stayed in bed and for a few days her temperature and cough fluctuated. On Wednesday we realised that it might not be as straight forward as we thought. She had started to become very pale and so weak she couldn't sit up. She was also off breast milk which was a concern. I called 111 on the Thursday morning and they recommended to go to A+E. We decided it was the best option... she was very poorly by this point.

When we got to Yeovil Hospital A+E she was seen immediately and they confirmed that her oxygen was worryingly low. She was given an oxygen mask straight away. We were shocked and so relieved we came.

We were then transferred to the children's ward and told we would be spending the night. On Thursday and Friday Soraya was given Nebulisers every hour and then put on an IV drip. Her oxygen saturation and heart rate would drop to 40 without the machine. She was experiencing Heart failure. Anything below 85 can cause brain damage. For 3 days I held an oxygen mask to her face until we decided to put her on the oxyflow which is two tubes which go up her nose and stick to her face. It was incredibly uncomfortable for her.

Her tests also showed that she had RSV (respiritory syncytial virus) and Pneumonia.

The consultant was concerned by the severity of her situation and had also picked up a Heart Murmur during her first examination so she had an xray on her chest. This showed the severe inflammation in her lungs but also a dark shadow over her heart.

An echocardiogram was needed almost immediately and to our absolute shock showed she has a Ventricular Septal Defect (VSD) which is a type of Congenital Heart Disease and that Soraya needs to have Open Heart Surgery urgently. Nothing can prepare a parent for this type of news.. Soraya has never shown any signs or symptoms before. She has been a happy, healthy, active little girl.

We stayed at the Hospital for 7 nights. We came home on 17th November. She became well again from the Virus and Pneumonia and we had an appointment with a Cardiologist from Southampton Hospital. He informed us the emergency of the situation and that because this has never been detected has caused major Pulmonary Hypertension. This means that over the next 2 weeks Soraya needs to have a catheter to see the state of her lungs and if she has ‘fixed’ Pulmonary Hypertension then surgery cannot happen.

If we cannot reverse the effects of Pulmonary Hypertension then Soraya will have a limited life which I cannot express how devastating that thought is. Without the surgery her heart will be working too hard and can cause heart failure.

We need all the help we can to treat medically and holistically Sorayas Pulmonary Hypertension so that she can have the Open Heart Surgery. This will mean good quality supplements, Homeopathic treatment, Hair strand test to check for deficiencies, organic food, trips to and from Southampton. I have a lot more research to do and Im sure there will be other holistic ways to help reverse the effects of it before the surgery. But we have to act fast. I look after Soraya full time and Laurence is self employed and with the cost of living being so high we need all the help we can get at this point.

We also have to move out of our home in December which couldn't be at a worse time right now, so any help with that would be beyond amazing.

We will be in deep gratitude for anything that can be given in this time of great emergency. Please hold Sorayas healing in your prayers. Thankyou endlessly for your support.

All of our love Tashi, Laurence and Soraya xxx