Levi spent the first three weeks of his life in Alder Hey Hospital.
After undergoing a variety of tests the doctors discovered he had multiple ventricular septal defects – holes in his heart.
We, as parents, were devastated as we knew it meant life long surgeries for our little baby boy. At eight weeks old Levi had a catheter operation to investigate further and doctors discovered his VSDs (ventricular septal defects) had healed well and all looked great.
We were overjoyed as we believed Levi was healthy. The doctors continued to keep a close eye on his heart. Over the following months every visit to his consultants was confusing. His doctors could see in scans and ECGs that he still had high pressures in his heart, but they couldn’t work out what was causing this.
Eventually Levi was referred to Great Ormond Street Hospital (GOSH), where he was diagnosed with idiopathic pulmonary arterial hypertension.
We had never heard of this condition and we discovered, as it is so rare, that there is very little research and information about it. After meeting with the specialists at GOSH it dawned on us just how serious PH actually is. We learnt that there are a few different types of PH, some more common than others. Levi’s specific type of PH, Pulmonary Arterial Hypertension is extremely rare, approximately one in 10 million babies are born with it. It is a life-limiting condition and currently there is no cure.
At the moment, medication keeps his condition stable but at what point in his life this will change, we do not know, as every patient reacts differently to the medication.
For some patients, medication stops working as the body adapts to it. There are other options such as lung and heart transplants but there are many other risk factors to be considered with transplants. Thankfully, Levi is not at that stage yet, but there are many children and adults who are in need of transplants.
We do not know what Levi’s future holds, but for now he is doing well and is a happy little three year old boy. Until a cure is found, sadly many babies, children, and adults will die or experience life-limiting symptoms. Unfortunately, the UK Government does not fund any research into finding a cure for this disease. Our family and friends support the research that The Dinosaur Trust works so hard to fund.
We hope more than anything that there will one day be a cure for our beautiful boy and all those that suffer with PH.