If your child has been diagnosed with a congenital diaphragmatic hernia (CDH), you can rest assured that at Boston Children's Hospital, your child is in good hands.
How is a CDH treated?
Each child with a CDH is unique, so treatment can vary based on the level of severity of the CDH, related anomalies and other factors.
At Boston Children's, fetal care specialists assist in the careful management of the mother's pregnancy and delivery, as well as the stabilization of the baby and postnatal treatment. This comprehensive, multidisciplinary care has resulted in high success rates.
- Our team of fetal care specialists can be present at the delivery to assist the obstetrician and begin immediately begin care of your child.
- Extracorporeal membrane oxygenation (ECMO) is a heart and lung bypass system that does the job that the heart and lungs would be doing; ECMO may be used temporarily while your baby's condition stabilizes and improves. Having your baby at a hospital like Boston Children's that is equipped with ECMO is vitally important.
After your baby is born, he will be taken to and cared for in our Medical and Surgical Intensive Care Unit (MSICU).
- Your baby will probably need to be placed on a breathing machine called a mechanical ventilator.
- Your baby will be placed on ECMO if it is needed.
- When your baby's condition has improved, our surgeons will repair his diaphragmatic hernia with an operation.
- The stomach, intestine and other abdominal organs are moved from his chest cavity back to the abdominal cavity.
- The hole in the diaphragm is repaired, or if the diaphragm is absent, an artificial diaphragm will be constructed and placed.
After the surgery:
Most babies will need to remain in the MSICU for a while after surgery.
- Although the abdominal organs are now in the right place, your baby's lungs are still underdeveloped.
- Your baby will usually need to have breathing support for a period of time after the operation.
- Even after your baby no longer needs help from a breathing machine, he may still need oxygen and medications to help with breathing for weeks, months or years.
Before leaving the hospital:
Before your baby is discharged, we conduct many tests to make sure that all of his systems are working well.
These tests can include the following:
- arterial blood gas
- developmental evaluation
- head CT scan
- chest X-ray
- brain stem auditory evoked potentials
- ophthalmology evaluation
- lung ventilation/perfusion scan
- upper GI (gastrointestinal) study
Some of these tests may also be repeated when your child is 6, 12, 24 and 36 months old.
What does the follow-up treatment plan involve?
A diaphragmatic hernia is a complex health concern that requires long-term follow-up. With that in mind, Boston Children's established an outpatient clinic to monitor and treat children born with CDH. There, your child will receive ongoing treatment from a multidisciplinary team of pediatric physicians, nurses and other care providers.
For more information on this program, see our outpatient clinic page.
Coping and support
It's essential to remember that many babies and their families have been down this path before. We've helped them, and we can help you, too.
There are lots of resources available for your family—within Boston Children's, in the outside community and online. These include:
- Patient education: From the first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. They'll also reach out to you by phone, continuing the care and support you received while at Boston Children's.
- Parent to parent: Would you like to talk with someone whose child has been treated for a CDH? We can put you in touch with other families who have been through similar experiences and can share their experience.
- Faith-based support: If you are in need of spiritual support, we'll help connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during the time you and your child are in the hospital.
- Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such stresses relating to illness and dealing with financial difficulties.
Boston Children's Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families.
On our For Patients and Families site, you can read all you need to know about: