But PH symptoms can be lessened, and a child’s heart and lung functions can improve through advanced treatments and multidisciplinary care that includes specialists from cardiology, surgery, pulmonary, genetics, and intensive care.
At the Boston Children’s Pulmonary Hypertension Program, our team of specialists knows that effective care of PH starts with an accurate diagnosis. PH varies greatly from child to child: It can range from less serious to severe, and because its symptoms overlap with those of other conditions, it may be difficult to diagnose. Our depth of experience and increasing knowledge of the role that related heart and lung diagnoses and genetics play in shaping a patient’s condition help us determine the underlying cause of a child’s PH — allowing us to devise the best possible personalized care plan.
Treatment may include medications to make it easier for your child’s heart to pump blood, or anticoagulants to prevent blood clots. For advanced cases of PH, several types of catheterization procedures, medicines, or other interventions can improve blood flow throughout the body, and help the heart and lungs heal. Lung transplantation can be an option for children who do not respond to other PH treatment.
How we treat pulmonary hypertension
As one of the leading and largest programs of its kind in the U.S., we bring together a diverse, skilled, and experienced group of Boston Children’s clinicians to provide a comprehensive diagnosis and individualized treatment. You and your child will benefit from the expertise of:
- cardiologists and pulmonologists who specialize in the treatment of pulmonary hypertension
- experienced advanced-practice nurses who aid and support our families
- cardiac intensivists and anesthesiologists
- specialists in cardiac catheterization, both diagnostic and therapeutic
- clinicians from the Center for Cardiovascular Genetics and the Pulmonary Genetics and Down Syndrome programs
- imaging specialists who use advanced imaging techniques to diagnose and monitor patients, following a unique CT scan protocol devised for PH and interstitial lung disease patients
- rheumatologists, hepatologists, and hematologists skilled in managing diseases that can occur with PH
- general surgeons and neonatologists who care for infants with congenital diaphragmatic hernia, bronchopulmonary dysplasia, and other developmental disorders
- specialists in vascular anomalies and interventional radiology who are skilled in the treatment of disorders such as hereditary hemorrhagic telangiectasia (HHT) and vein of Galen malformation
- other related clinical programs at Boston Children’s, including the Pulmonary Vein Stenosis and Lung Transplant programs
- pharmacists, social workers, nutritionists, and psychological support professionals
Whether your child needs only close monitoring and follow-up care, or more extensive treatment with medications and therapies, our team will work with your family to provide the most appropriate coordinated care.
Collaborating at Boston Children’s to specialize PH treatment
We are part of several clinical collaborations with other Boston Children’s disciplines that further open the door to specialized treatment of PH:
- a young women’s pulmonary hypertension program with the Division of Adolescent/Young Adult Medicine that provides age-appropriate developmental care for young women
- an initiative with the Department of Pathology for multidisciplinary review of lung biopsy specimens
- a collaboration between the Aerodigestive Center, Feeding and Swallowing Program, and Sleep Center to further explore the connections between PH and breathing, eating, swallowing, digestion, and sleep
Partnering around the world to improve PH care
We also collaborate with organizations that contribute to new insights on PH treatment and research, benefitting children around the world:
- We are active members of the Pediatric Pulmonary Hypertension Network (PPHNet), a group of PH specialists and centers dedicated to improving the health, quality of care, and outcomes for children with PH.
- Our program contributed to the ATS/AHS guidelines on the treatment of PH patients.
- We contribute to several multi-center registries, including the Pediatric Pulmonary Hypertension Network (PPHNet) informatics registry; TOPP-2, led by the Association for Pediatric Pulmonary Hypertension; and for POTTS shunts. The data collected in these registries help us study patterns in the diagnosis and treatment of those with PH.
- As members of its scientific research consortium, we collaborate with the advocacy group TBX4Life, supporting its mission of fostering research, raising awareness, and helping families affected by the rare mutation of the gene TBX4.
Better understanding PH through research
While we have made tremendous strides in understanding the causes and complexities of pulmonary hypertension, there’s still much more to learn. Our program continues to lead and participate in clinical trials and studies that explore the triggers of PH, aim to diminish its symptoms, and strive toward developing a cure.
A significant step in that direction is our continued exploration of the connections between genetics and PH. We partner with several genetics-based programs at Boston Children’s — Pulmonary Genetics, Cardiovascular Genetics, and Down Syndrome — and genetics institutions around the world as we learn more about the relationships of underlying biological conditions and PH. We also work closely with patients and their families to discover how their genetic profiles connect to the causes of PH, and we offer them counseling to help them better understand how these genetic illnesses will affect them.
Always striving to improve a child’s quality of life
Having a child diagnosed with pulmonary hypertension is understandably difficult, but your family will have the full support of the Pulmonary Hypertension Program. By bringing together clinicians from a wide range of related disciplines and drawing on the vast resources of Boston Children’s, we’re well-positioned to improve the quality of life of every child we treat.