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Colorado Fetal Care Center
Congenital Diaphragmatic Hernia (CDH) in Babies
We see more, treat more and heal more kids than any other hospital in the region.
What is congenital diaphragmatic hernia?
A congenital diaphragmatic hernia (CDH) occurs when a baby's diaphragm doesn't form completely during fetal development. This leaves an opening between the chest and abdominal cavities, allowing abdominal organs to herniate (protrude or enter) into the chest cavity and prevent lung development.
What does CDH mean?
- Congenital means the condition is present at birth.
- Diaphragmatic means the condition affects the diaphragm, a dome-shaped muscular structure that helps your baby breathe. It’s located below the lungs and above the contents of the abdomen. You can think of a typical diaphragm like a wall that helps keep the contents of the chest (lungs and heart) separate from the contents of the abdomen (liver, stomach, bowel, etc.).
- Hernia refers to the bulging of an organ or tissue through an opening in the surrounding muscle or connective tissue, one that wouldn't be there in typical development.
How does CDH affect babies before birth?
While in the womb, babies don't use their lungs; mothers pass oxygen and nutrients the baby needs through the umbilical cord. For babies with CDH, their abdominal organs are in the chest where their lungs are supposed to exist and grow, and as a result:
- The lungs don't grow as big as they should.
- The blood vessels in the lungs don't form correctly.
How does CDH affect babies after birth?
CDH is a life-threatening condition because it limits the lungs' growth and can seriously affect a baby's ability to breathe at birth. These babies will need breathing support as soon as they enter the world. Due to their underdeveloped lungs, a condition called pulmonary hypoplasia, newborns won't be able to take in enough oxygen and will not receive enough blood flowing to their lungs.
It's critical that moms deliver babies who are diagnosed with CDH before birth in a fetal care center that has experience in caring for the complex needs of these vulnerable newborns. Babies with CDH require an all-hands-on-deck approach during the first hours of life.
At the Colorado Fetal Care Center at Children's Colorado, we have a dedicated CDH team consisting of neonatal and surgical CDH experts. They specialize in complex delivery planning for babies with CDH, as well as their treatment, management and ongoing care.
What causes congenital diaphragmatic hernia in babies?
A diaphragmatic hernia usually develops about 9 to 10 weeks into pregnancy but might occur as early as 5 to 6 weeks. There is no known way to prevent CDH, and there is nothing the mother did or does that could cause their unborn baby to develop CDH.
CDH may occur by itself (known as isolated CDH) or with other conditions. In about 10% to 20% of cases, CDH is caused by or associated with a genetic disorder, such as Down syndrome (trisomy 21), Edward's syndrome (trisomy 18) or Patau syndrome (trisomy 13). About 60% of the time, CDH occurs with another congenital condition that affects organ structure and 40% of the time those are congenital heart defects.
How common is CDH in babies?
CDH affects approximately 1 in 2,500 births.
The Colorado Fetal Care Center is one of the world’s leading centers treating CDH and we see more cases than most other hospitals. That means here, the rare is common and our CDH care team has more experience caring for the complex needs of these critically ill infants. Already with some of the best outcomes in the nation, we're always looking for ways to deliver even better care for babies with CDH.
What is the CDH survival rate?
The success of CDH treatment often depends on if a baby has other health issues and a singular survival rate for CDH is hard to determine. Worldwide, the survival rate for CDH has increased over the decades from 50% to between 70% and 80% according to some research. At Children's Colorado, our team has achieved some of the highest congenital diaphragmatic hernia survival rates in the country, particularly given the severity and complexity of the cases we treat. The average survival rate for babies with CDH at Children's Colorado is consistently over 80% and we’re always working to improve that number.
Can babies with CDH breastfeed?
Babies with congenital diaphragmatic hernia usually don’t feed by mouth for the first several days or weeks of life, but mothers can pump breast milk and store it. Breast milk contains important nutrients for your baby and we encourage breast milk to be used. Our lactation specialists and neonatal nurses have experience helping babies with CDH feed and can help find the best solution for your family. Eventually, feeding at the breast may be possible.
CDH success story
Emma's chances for survival were very slim. Her parents moved from Seattle to Denver to increase her chances and they were rewarded generously.
What are CDH signs during pregnancy?
There typically aren't any outward signs of CDH during pregnancy. However, some pregnancies complicated by CDH may develop a condition called polyhydramnios, a buildup of amniotic fluid. In the case of polyhydramnios, the mother’s abdomen may feel swollen or have increased pressure.
What are the signs of CDH on my ultrasound?
Your doctor may suspect CDH if your ultrasound shows one or more of the following signs:
- A fluid-filled stomach (or other abdominal organs) within the baby's chest
- Evidence of pulmonary hypoplasia (lungs are small and underdeveloped for the stage of pregnancy)
- A chest mass
- Incorrect position of your baby's liver
What are CDH symptoms?
There are several signs of CDH in newborns:
- Breathing fast
- Rapid heart rate
- Noisy sounds with each breath
- Skin is a bluish color due to lack of oxygen
- The stomach appears sunken-in
Alert your doctor right away if your baby exhibits any of these symptoms.
How do we diagnose CDH?
We can diagnose CDH before birth using fetal ultrasound, usually by a maternal fetal medicine (MFM) specialist. We typically detect CDH:
When physicians suspect CDH, they refer their patients to our multidisciplinary team of maternal, fetal and pediatric CDH experts at the Colorado Fetal Care Center, where we specialize in the evaluation and care of infants with CDH.
CDH diagnosis and evaluation at the Colorado Fetal Care Center
Because CDH can be mistaken for other chest masses, we recommend an evaluation of your baby at the Colorado Fetal Care Center, where our expert team can perform comprehensive prenatal (before birth) CDH testing. A full CDH evaluation includes:
- A fetal echocardiogram (heart ultrasound) to detect any accompanying fetal heart conditions
In some cases, we may also recommend an amniocentesis to evaluate the amniotic fluid surrounding you baby. This minimally invasive fetal diagnostic test helps clarify the connection between potential genetic issues and CDH. This is a simple procedure in which we remove amniotic fluid for testing using a small needle and ultrasound imaging.
Our advanced diagnostic capabilities and CDH expertise allow our experts to not only diagnose your baby's CDH, but to determine its severity. We also test for other conditions and make recommendations for care before and after birth to reach the best outcome possible.
CDH treatment
Learning your child has a congenital diaphragmatic hernia can be scary. But at the Colorado Fetal Care Center, we help you have a healthy, safe delivery and dedicate ourselves to getting the best possible outcome for your family.
Diaphragmatic hernias are typically treated at and after birth. However, we may treat the most severe cases before birth if we think the lungs will be severely underdeveloped.
FETO: fetal surgery for congenital diaphragmatic hernia
The Colorado Fetal Care Center specializes in advanced fetal surgical techniques. For the most severe cases of CDH, our specialists may recommend fetoscopic endoluminal balloon tracheal occlusion (FETO), a minimally invasive fetal surgery to help a baby’s lungs grow. FETO is a fetal therapy and not every baby with CDH should have this procedure. At Children's Colorado, we are one of just a handful of approved FETO-trial sites in the United States.
With FETO, we help the lungs grow enough so the baby will be able to breathe successfully once they're born. Learn more about FETO therapy for severe CDH.
Extracorporeal membrane oxygenation (ECMO) and breathing support
For severe cases of CDH, after-birth care may include the use of extracorporeal membrane oxygenation (ECMO), a machine that performs the function of the heart and lungs while they grow.
Level IV (four) Neonatal Intensive Care Unit (NICU)
Our NICU on Anschutz Medical campus has earned the highest distinction (Level IV) and is a nationally recognized leader in treating critically ill infants. Our fully dedicated Labor and Delivery Unit is just down the hall from our NICU so you can deliver here and stay with your baby while we treat them.
CDH delivery options
Your fetal care team will recommend the best method of delivery for you. Each case is different, and your specific treatment plan will be designed to get you the best outcome. In some severe cases of CDH, a caesarean section (C-section) may be best.
Our dedicated CDH team carefully plans the repair of your baby's CDH. When the time is right, our team will perform surgery to repair your child's diaphragm and allow their lungs to grow. Our experienced team of experts will make the right decision for your baby in coordination with you and your family.
Why choose Children's Colorado for CDH treatment?
The fetal care team at our Colorado Fetal Care Center is at the forefront of treatment for this condition. We have a dedicated labor and delivery unit for you to deliver here, so we can monitor and treat your baby in our NICU just steps away.
For severe cases of CDH, we provide the use of ECMO, which allows your baby's underdeveloped lungs to grow, as well as advanced treatments for pulmonary hypertension. We also continually participate in research so you and your baby have access to the newest, most advanced treatments.
216+
Patients with CDH treated since 2012
79%
CDH survival since 2012
What are the complications of CDH?
The complications of a diaphragmatic hernia depend on the size and location of the opening. Pulmonary hypoplasia and pulmonary hypertension are two main concerns.
CDH and pulmonary hypoplasia
The most common CDH complication is pulmonary hypoplasia, or underdeveloped lungs. This condition results from the abdominal contents (bowel, stomach and liver) putting pressure on the lungs, preventing them from fully growing while the baby is still in the womb. Pulmonary hypoplasia can lead to a variety of issues after birth, including:
- Pulmonary hypertension (high blood pressure in the lungs)
- Respiratory failure
In some cases, the pulmonary hypoplasia can be significant enough to affect the survival of the newborn. That's why early detection and diagnosis of CDH are so important. By diagnosing CDH before birth, our CDH team has time to design the best delivery and treatment plan for your baby. Our Pulmonary Hypoplasia Clinic is the only multidisciplinary clinic in the Rocky Mountain region offering comprehensive care for infants and children with conditions that limit lung growth.
CDH and pulmonary hypertension
Pulmonary hypertension, or high blood pressure in the lungs, is a disorder that occurs when the blood vessels lining the lungs (pulmonary arterioles and capillaries) are too narrow. This makes it hard for blood to flow through the lungs, raising the heart’s blood pressure and making it work harder than usual. This can potentially lead to heart failure.
Inhaled nitric oxide treatment
At Children's Colorado, we pioneered the use of inhaled nitric oxide to treat persistent pulmonary hypertension of the newborn. This has now become the international standard of care. Our Pediatric Pulmonary Hypertension Program is one of just a few pediatric programs in the country accredited by the Pulmonary Hypertension Association for the ability to diagnose and care for medically complex patients.
Our fetal care team ensures that you will meet all our specialists at one time to map out your care plan. We care for your medical and emotional needs before, during and after your delivery and as your child grows.
Read about children with CDH that we’ve treated
- Ava's CDH was diagnosed after birth and she had to be air-lifted to Children's Colorado. Now she does nearly everything other 3-year-olds do.
- As a twin with a severe case of CDH, Emily's care was especially challenging. Our team was able to save her and her brother.
- Noah was on heart-lung bypass for 18 days, and now he's thriving.
If you'd like to learn more about congenital diaphragmatic hernia, visit:
- CDH International helps families of babies born with a congenital diaphragmatic hernia by providing support services, raising awareness and furthering research.
- Cherubs is the family support division of CDH International.
- The Fetal Health Foundation supports families receiving a fetal syndrome diagnosis like CDH by funding life-saving research, increasing awareness and sharing medical information on fetal syndromes.
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