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CDH Care at CHOC

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CDH Treatment at CHOC Leads to an 88% Survival Rate

At CHOC, we take a multidisciplinary approach to CDH treatment that provides you and your baby with the best possible care. Our dedicated and highly individualized clinical programs for congenital diaphragmatic hernias have led to exceptional outcomes in patient treatment, with an 88% survival rate for CDH cases (exceeding national benchmarks of 60-70%). As a national leader in pediatric healthcare services, treatment at CHOC also provides continuity in care long after CDH repair to ensure the continued health of your child.

Why Choose CHOC for CDH Care?

Multidisciplinary Team of CDH Experts

At CHOC, we use a multidisciplinary approach to CDH treatment that brings together fetal experts from various fields of medicine to develop an individualized treatment plan based on the specifics of your baby’s condition. Your CDH care team at CHOC will most likely consist of a maternal-fetal medicine specialist (MFM), neonatologist, fetal cardiologist, pediatric thoracic surgeon, pediatric pulmonologist and pediatric anesthesiologist. Additionally, as a high-volume CDH surgery center, our large team of experts is highly experienced in treating babies with CDH.

Expert CDH MFM Specialists

With years of experience treating rare fetal anomalies, our maternal-fetal medicine specialists are experts in managing congenital diaphragmatic hernia diagnoses. Their skill in conducting highly specific fetal diagnostic tests provides the most precise hernia location and size measurements for every baby’s condition to ensure development of the best treatment plan possible.

Level 4 NICU

Many hospitals offer intensive care units for newborns, but only a select few are rated by the American Academy of Pediatrics as Level 4 – the highest rating available. CHOC’s neonatal program provides three neonatal intensive care units, a team of board-certified neonatologists, and special units just for small babies and those who need complex surgery.

Only Surgical NICU on the West Coast

When it comes to pediatric CDH surgery, no other hospital in the region is prepared to meet the challenge like CHOC. We provide the only Surgical NICU on the West Coast, where critical technology necessary for treatment of babies with CDH is readily available. We also have developed unique processes and protocols to address pain management, recovery from anesthesia and hypothermia prevention.

Gold Level ELSO Award of Excellence in Life Support

CHOC is the only institution in Orange County to offer extracorporeal life support (ECLS), also referred to as extracorporeal membrane oxygenation (ECMO). We helped pioneer this lifesaving technology as one of the first institutions to use it more than 40 years ago. Today, we are one of the few centers in the world to receive a gold-level Extracorporeal Life Support Organization (ELSO) Award of Excellence in Life Support, as well as a three-year designation as an Extracorporeal Life Support Organization Center of Excellence.

A Leader in CDH Research

Our pediatric general and thoracic surgeons regularly lead and contribute to CDH studies that result in greater disease awareness and the development of innovative treatment solutions. On top of each specialist’s research, CHOC is also a member of the CDH Study Group, an international cohort of CDH centers dedicated to improving outcomes. Our experts’ recent publications include:

CDH Patients at CHOC

Alicia’s story: Repairing a right-sided congenital diaphragmatic hernia

Meet CHOC NICU graduates

The Power of Music Therapy: Darlyn’s Story

The CHOC CDH Treatment Process

Here’s what you can expect when you choose CHOC for your baby’s CDH care: a step-by-step process from your prenatal diagnosis to your baby’s CDH repair surgery after birth.

Appointment/Referrals

A diaphragmatic hernia will often be detected during your fetal ultrasound in the second and third trimesters. When CDH is identified with your OB, your doctor may refer you to CHOC for treatment planning at The Fetal Care Center of Southern California. Upon receiving a referral form, The Fetal Care Center will organize all necessary authorizations, your record retrieval and the referral request. Once all your information is received, our nurse coordinator will contact you to schedule an appointment and conduct an OB history before you come in.

If you have received a congenital diaphragmatic hernia diagnosis and are looking for the best care for you and your baby, contact us to make your first appointment at The Fetal Care Center.

Fetal Care Appointment

At your first fetal care appointment, you’ll receive various testing to confirm your diagnosis and determine the type and severity of your baby’s congenital diaphragmatic hernia. Diagnostic testing may include:

Fetal ultrasound
Fetal MRI
Fetal echocardiogram
Genetic counseling

In this same day, you’ll meet with the team of specialists collaborating on your baby’s treatment plan to discuss the diagnosis, treatment options, possible outcomes and answer all your questions. A team of specialists for CDH treatment will typically include a maternal-fetal medicine specialist, fetal cardiologist, pediatric CDH surgeon and neonatologist.

About 20-40% of babies diagnosed with CDH have other anomalies that require treatment. If this is the case, you might need to undergo other testing and meet with related fetal and pediatric specialists in that area.

Treatment at The Fetal Care Center of Southern California is designed with you in mind. While your first appointment can include all needed diagnostic testing and education consultations with specialists, we understand the process can be long. Appointments will be arranged according to your preferences and availability.

The Duration of Your Pregnancy

Treatment during the duration of your pregnancy will look differently for everyone. For families that are self-referring or relocated to Orange County, The Fetal Care Center of Southern California will lead your care during your pregnancy. For patients that are referred by their OB or MFM, our team of CDH experts will work closely with your existing providers to deliver a continuity of care that supports the best outcomes for you and your baby.

If treatment for your baby requires fetoscopic endotracheal occlusion (FETO), The Fetal Care Center will refer you to a leading program for this procedure. After which you’ll return to your regularly outlined pregnancy care plan.

Your Baby's Birth

Babies with CDH are typically born around 38-39 weeks and can be delivered vaginally unless other complications arise requiring a cesarean (C-section) delivery. All delivery options will be discussed with you by your care team. Your baby’s delivery will take place at a nearby hospital to ensure they have immediate access to any necessary postnatal specialized care and treatment immediately after birth.

After Your Baby is Born

Our doctors and nurses will try to give parents a moment to meet their baby for the first time immediately after delivery, but they’re focused on helping them in the safest/quickest way possible. Because babies with CDH have underdeveloped lungs, immediately after delivery they will have a breathing tube (endotracheal tube) inserted to allow a ventilator to support their breathing. Doctors may also draw labs and place special IVs, like umbilical venous catheters, to give medications. Another tube will be placed through your baby’s nose to their stomach, allowing the stomach to remain empty. Keeping the stomach clear gives their lungs as much room in the chest as possible to expand. Once your baby is determined to be stable, they’ll be carefully transported to the NICU for continued evaluation and condition management. Parents can stay with their baby in the NICU. NICU rooms are also equipped with live cameras for viewing your baby while you’re away. Learn more about our NICU family resources.

The goal during a baby’s NICU stay is to stabilize them to eventually have CDH repair surgery. While in the NICU, your baby may undergo ongoing testing such as echocardiograms and chest X-rays to update all measurements needed to prepare for their CDH surgery. Babies who do not stabilize while in the NICU may need to be moved onto extracorporeal membrane oxygenation (ECMO) to allow their lungs to rest. This machine acts as an artificial lung, allowing your baby’s lungs to be bypassed in the process of oxygenating blood.

CDH Repair Surgery at CHOC

The timeline for CDH repair surgery depends on the severity of your baby’s condition and their response to treatment while in the NICU. Repair surgery is not time-sensitive or an emergency and instead is adjusted for each baby’s progress. Your baby will have improved outcomes if they are strong enough to undergo the procedure. Typical markers that indicate a baby is ready for surgery are improvements to their pulmonary hypertension and removal from ECMO treatment if they are on it.

When our doctors determine the benefits of the surgery are greater than the risks, CHOC’s multidisciplinary team of pediatric surgeons and anesthesiologists will work together to repair the hole in your baby’s diaphragm. When it comes to planning your baby’s surgery, our team of pediatric surgeons works together to provide the best possible plan. Because babies with CDH are very sensitive to environmental changes, their surgical procedure might be performed in the Surgical NICU at CHOC. Your baby’s bed will be transformed into their very own operating room, eliminating any additional stress from transport.

There are two surgical repair methods done at CHOC: open repair surgery and thorascopic surgery. During an open repair, the surgical team makes an incision on the upper abdomen to gain access to the chest. They use this incision to push the organs herniated in the chest back down to the abdomen. When the defect is small, stitches are used to close the hole. Larger hernias might need a Gortex patch to be sewn in and stay permanently. When possible, CHOC also performs a less invasive thorascopic surgery. While it follows similar steps to the open repair, three or more smaller incisions are used to access the hernia and can result in less pain and scarring. This procedure is only done on very stable babies who can be safely transferred to operating rooms.

CDH Surgery Recovery

On average, babies will stay in the NICU for 3-4 weeks, but time varies based on individual progress. After surgery, your baby will remain on a ventilator until the NICU team decides they can safely breathe on their own. During surgery, their abdominal organs were moved back to their proper place, so your baby’s abdomen may appear fuller and tight afterward.

Once a baby is ready, the priority is to start feedings either by mouth or tube. They will slowly be weaned into feeding through incremental increases as your baby can tolerate. Our NICU team will monitor them closely during this period, as this will be the first time their intestines and stomach are receiving food. If your baby is still on a ventilator during this period, a feeding tube will be used. Babies transitioned off ventilation will begin bottle feeding. We encourage the use of breastmilk over formula for feedings during this period and have lactation specialists available to work with mom on pumping. Until your baby reaches full feeding amount, they’ll continue to receive supplemental nutrition via IV.

When your baby is stable, we encourage skin-to-skin contact, but until that point, we can use blankets and stuffed animals to provide your baby with the parent connection and smell. During recovery, we have rehabilitation services like physical and occupational therapists to work with babies who have been in the hospital for an extended time.

CDH Patient Discharge

Each baby’s care team will consider various health aspects to determine discharge. Signs that a baby is ready to go home can include nursing or taking bottles consistently, gaining weight steadily, keeping their temperature in an open crib and parents completing necessary education and training. Once your baby is ready to go home, we’ll work with you to set-up these follow-up appointments:

Pediatrician 1-3 days after discharge
Surgeon 2-3 weeks after discharge
Any other specialists that provide care for your baby

For complex babies who need follow-up care beyond what a pediatrician can do, we offer the NICU Bridge Program that works with our neonatologists.

Relocation to Orange County

In the weeks leading up to your pregnancy and after the birth of your child, you will be required to stay in proximity to CHOC Hospital. If you do not live in Orange County or a neighboring area, we will work closely with you and your family to create a warm, compassionate environment during your stay. We offer services for parents to receive hotel discounts for their stay, philanthropic funds for treatment and more.

We know available resources are a large part of choosing your care with CHOC. Visit our Area Resource Guide to learn about all the family amenities CHOC provides.