Pulmonary hypertension (PH) can affect newborn babies, young children and teenagers. As with adults, PH in children can be associated with another condition, or in some cases have no apparent cause. In children however, the outlook, treatments, tests and overall needs can differ greatly from PH in adults.
The main symptoms of PH are similar in children to symptoms in adults. The main symptoms are breathlessness and tiredness. Symptoms more common in children with PH than in adults with PH include:
In some cases, children with PH can fail to put on weight like other children.
The tests that are used to diagnose PH in children are similar to those used in adults. However, tests used to look for blood clots, such as ventilation-perfusion scanning are rarely needed. Like adults, PH in children is often misdiagnosed as other conditions such as asthma. The outlook for untreated PH can be worse in children than in adults, so it is important that PH is diagnosed as quickly as possible.
In the past decade or so, the approach to the overall management and treatment of children with PH has improved greatly. Treatments used in adults are also effective in children. However, because children change more quickly than adults, they need to be watched closely by the PH team. This allows treatments to be changed, depending on the child’s needs. The good news is that, with the correct treatment, the outlook for children with PH appears to be better than for adults with PH.
Children with PH receive specialist care from Great Ormond Street Children’s Hospital (GOSH), either via the central service in London or via shared care clinics across the country. In this video specialists Shahin Moledina and Rebecca Turquet answer common questions about care at GOSH.
You should try to treat a child with PH as normally as possible. They will be much happier if the rules stay the same and life carries on as normal. Children that are treated differently behave differently, and the only difference in a child with PH is that they have a medical condition. Behavioural problems should be dealt with as soon as possible, as you would with a healthy child. However, children just out of hospital may be clingier than normal or revert to earlier problems, such as bedwetting. Ask your PH team for help or advice if you feel you need it.
Try not to overlook other children in the family. They may feel upset at the extra attention that their brother or sister is getting. Make sure that friends and relatives are aware of the need to given equal attention to all your children.
Make sure that you have contact with a social worker (ask your PH team if you haven’t already been introduced to one). Your social worker can help with issues such as talking to your child’s school and advising on any benefits that will help deal with potential financial difficulties.