Neonatal pulmonary hypertension is a medical condition that affects newborns, involving increased pressure in the blood vessels of the lungs and is often referred to as “PH”.
PH makes it more difficult for blood to flow through vessels, and the heart must work harder to pump blood around the body. This can lead to reduced oxygen levels, and cause strain on the heart.
In newborn babies, pulmonary hypertension is usually a transient condition but can sometimes persist for several weeks, months or years. Unfortunately, having pulmonary hypertension is a serious, and sometimes life-threatening, condition which can lead to babies dying prematurely or having long-term symptoms.
Babies with pulmonary hypertension often need more help with their breathing and circulation which means spending longer on a breathing machine (ventilator), on oxygen therapy and/or on medicines to support their blood pressure or heart function.
A major challenge in treating pulmonary hypertension in babies is that there are many different causes, which have different treatments options. In some babies it can be difficult to determine the cause, and sometimes there is more than one, making treatment very challenging. Currently there are very few treatments approved for the treatment of pulmonary hypertension in newborns and more research needs to be done to find medicines that can be used to treat these babies.
Due to pulmonary hypertension in babies being relatively rare (about one in 500 babies develop pulmonary hypertension), it poses a challenge to study enough babies with the same type of pulmonary hypertension in one centre. This makes it difficult to perform conventional clinical research studies such as randomised controlled trials. This limitation highlights the importance of establishing a multi-centre international collaboration from experts caring for these babies.
We aim to create an international registry of babies diagnosed with pulmonary hypertension, which will enable recruitment of babies from all over the world into larger clinical research studies. We can use this data to study which babies will develop pulmonary hypertension, what the underlying cause is, which babies go on to have chronic pulmonary hypertension and how they respond to different treatments, with the goal of improving short and long-term outcomes in these babies.