Congenital Diaphragmatic Hernia (CDH) Care in our St. Louis Children’s Hospital NICU

At Saint Louis Children’s Hospital, we have the region’s first and only multidisciplinary team dedicated to providing highly specialized care to babies with congenital diaphragmatic hernia (CDH). From diagnosis to delivery and beyond the hospital, our CDH team is committed to providing hope, compassion, and expertise as we walk alongside you and your family on this journey.

Why St. Louis Children’s Hospital NICU for CDH Care?

• The St. Louis region’s first and only CDH-specific NICU team
  • ◦ Your baby will be cared for by a dedicated group of neonatal intensive care doctors, pediatric surgeons, nurse practitioners, nurses, dietitians, and therapists who are specially trained to care for all babies born with CDH. This collaborative team ensures that your baby receives 24-hour, personalized, expert care and your family is supported every step of the way.
• Excellence in outcomes:
  • ◦ Our team approach to care paired with clinical excellence has allowed for a nearly 90% survival rate of all our infants with CDH over the past 5 years. This is higher than the national average of 70%.
  • ◦ Nearly 80% of our infants with severe CDH have survived over the past 5 years. This is higher than the national average of 38%.
• Experienced ECMO support:
  • ◦ We are an Extracorporeal Life Support Organization (ELSO) Platinum Level Center of Excellence for ECMO, providing the best ECMO support for those CDH patients who need it.
  • ◦ Every minute counts. Not all babies with CDH will need life support from this heart-lung bypass machine, but it is crucial for CDH babies to be born at a hospital who can provide that support when necessary.
  • ◦ Our Saint Louis Children’s Hospital NICU ECMO team cares for the highest number of neonatal ECMO patients in the region each year. This experience is crucial when providing this life-saving therapy to babies.
• Personalized, consistent care that goes beyond the NICU
  • ◦ Babies with CDH often need extra support throughout childhood. The same doctors who cared for your baby in the NICU will continue to support him or her once they are discharged home, collaborating with you and their pediatrician to ensure they are meeting their developmental milestones.
• We Keep Mom and Babies Together
  • ◦ The St. Louis Children’s Hospital NICU is directly connected to the high-risk labor and delivery unit at Barnes-Jewish Hospital, providing the best care and experience for moms and babies.
  • ◦ Babies with CDH have the best chance of survival when they are born at a hospital that specializes in high-risk pregnancies and has immediate access to advanced NICU care that includes ECMO and mechanical ventilation capabilities.
  • ◦ Moms stay close by and can easily visit their babies as they recover from childbirth.

What to Expect While in the NICU

At St. Louis Children’s Hospital, we have a dedicated space in the NICU for our babies with CDH where a dedicated team will focus on caring for your baby. We recognize that the best care comes from putting the best minds together to improve outcomes for your baby. This is what you can expect with our team approach to care:

CDH Team Neonatologists

A small group of our NICU physicians will provide 24-hour coverage for your baby ensuring the best, most consistent care at all hours. These physicians will:

• Attend all CDH deliveries and stabilizations.
• Supervise care during all phases of the hospital stay from birth to discharge to ensure continuity of care.
• Care for all patients requiring ECMO in the NICU; if your baby needs ECMO, it will be the same doctor caring for your baby.

Pediatric Surgeons

Our pediatric surgeons will examine your baby daily and collaborate each day with the NICU team to provide excellent care and determine repair timing. Once your baby is in good enough condition, these experienced surgeons will fix the diaphragmatic hernia. They will offer the best surgical approach for your baby:

• Minimally invasive surgical repair techniques to those infants who are good candidates.
• Open repair with primary or patch repair in those infants with defects too large for a minimally invasive approach.

Neonatal Nurse Practitioners

A group of dedicated providers with expertise in CDH care that provide 24-hour care to your baby throughout their hospital stay.

CDH Champion Nursing Team

A small group of dedicated nurses with additional training in the care of infants with CDH that provide 24-hour bedside care to your baby.

Registered Dietitian

A dietitian will create a care plan and provide nutritional support to you and your baby while in the NICU and after discharge. They round with the NICU team to ensure proper growth and nutrition specific to the needs of infants with CDH.

Therapy Services

Our speech, occupational, and physical therapists will work with your baby throughout the hospital stay to address the specific feeding challenges and therapy needs of babies with CDH. They will also teach you how to maximize your child’s growth and development.

During your hospital stay, you will interact with many other clinicians, each providing specialized care tailored to your baby’s needs. Our team works closely together and remains in constant communication to ensure we stay focused on the shared goal of helping your baby thrive. Meet other members of your CDH care team.

Our Team Approach Results in Excellent Outcomes

As the largest CDH program in the region, our high volume of patients better equips us to handle your child’s unique CDH medical needs. This clinical excellence and experience, combined with our team approach to care, has allowed us to achieve excellent outcomes:

• Over the past 5 years nearly 90% of infants with CDH have survived in our NICU.
• Survival for the most severe infants is nearly 80%.
• Less than 1/3 of our infants with CDH will require ECMO.