What is CDH?
Congenital diaphragmatic hernia (CDH) occurs when the diaphragm does not develop, develops partially or develops with a hole in it. This allows digestive organs to migrate into the chest cavity restricting lung growth in the unborn child. Most children are diagnosed with CDH receive the diagnosis at the standard 20 week anatomy ultrasound.
CDH occurs in 1 in every 2500 babies.
Babies born with CDH undergo surgeries and long hospitalizations.
The cause of CDH is not yet known.
Until a specific cause is determined, CDH cannot be prevented.
Many CDH cases can be detected with an ultrasound, sometimes as early as 16 weeks.
The hospital you choose for delivery is one of the few things you can control. We at The CDH Foundation encourage each family to research and to deliver at a facility with a Level IV NICU and an experienced ECMO team.
There is no “typical” length of stay in the NICU. Some babies head home within weeks while others may require a more extended stay.
Currently, 30% of babies born with CDH do not survive to their first birthday. This number increases to 50% for children who require ECMO.
This fantastic two minute video beautifully summarizes the CDH journey. We highly recommend this video to all CDH parents, families and friends.
How can you help a family who has just been diagnosed?
• Learn as much as you can about CDH so that when they talk about their baby you have some understanding. Check out our resource page for more information.
• Ask before you throw a shower or celebration. CDH parents know there is a chance their baby may not come home. Some couples want to do all of the typical celebrations for expectant parents. Other parents want to wait and know what their prognosis is before a showering of gifts. Both options are valid and both should be respected.
• Ask how mom is feeling and ask the parents about their baby. Does he/she have a name? Can I see a sonogram photo? How have your doctor’s appointments gone?
• Remember that a family expecting a CDH baby is going through a lot of emotions and may be very stressed. Consider ways you may help. Some examples include dropping a meal off before the baby is born, purchasing restaurant gift cards, giving them quarters for hospital vending machines, or paying for a Netflix or Hulu subscription that can be used at the Ronald McDonald House.
• Once the baby is born, ask to see photos. There may be tubes from a ventilator, ECMO and IVs, but tell the parents how beautiful their child is.
• Do not share information on social media or in prayer circles unless the family specifically asks. Sharing this information can lead to misinformation, unexpected phone calls and emails to parents and grandparents who do not need and were not prepared for this extra stress.
• Respect the boundaries that parents communicate. Some parents are going to want to see their family and friends at the hospital and at home. Some parents are going to want complete privacy. Please respect their wishes whatever they may be.
• Ask how you can support your loved ones. Then listen. This means more than you will ever know.