The team at Johns Hopkins All Children’s Hospital provides expert care for families who have received a CDH diagnosis for their baby. We’re ready to discuss with you how we can help your patient.
In the past when families received a congenital diaphragmatic hernia (CDH) diagnosis for their baby, few options were available. But that has changed.
The team in the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, provides expert, compassionate care for families during a highly stressful time. We can offer hope to your patient that was previously out of reach for many families—a hope reflected in our experience and survival rate.
What makes us different
- Survival: Infants treated here experience a survival rate of greater than 90% even in severe cases, which exceeds national benchmarks.
- Dedicated center: Our dedicated 15-bed inpatient care unit is the first in the nation to provide 24/7 specialized care for infants with CDH.
- Leadership: The center is led by David Kays, M.D., who has treated nearly 600 children with CDH, and has spent two decades researching and redefining care for babies with CDH.
- Team: The team includes specialists in surgery, critical care, neonatology, cardiology, neuropsychology, pulmonology, GI, and other specialties to meet the individual needs of each patient. Each member of the team brings experience in applying their expertise in their specialty to the care of babies with CDH. Nurses in the CDH Center are part of the hospital’s Magnet-designated nursing team. Magnet-designated refers to the highest recognition a hospital can receive for nursing excellence and high-quality patient care, from the American Nurses Credentialing Center.
Consistent care for every baby
Our patients are treated by a team that understands the importance of consistent care based on a treatment plan that is personalized for every baby. Our focus on post-natal management has helped us achieve survival levels not previously thought possible, even in severe cases.
Many patients with more severe CDH require extracorporeal membrane oxygenation (ECMO), which is an integral part of the care options at Johns Hopkins All Children's. While national survival of CDH patients that require ECMO is 50%, CDH patients that require ECMO at Johns Hopkins All Children's survive at rates in excess of 90%.
CDH spectrum of disease
CDH is typically diagnosed during the 20-week ultrasound, and cases of CDH can range greatly in severity. The hole in the diaphragm that categorizes CDH allows the intestine, stomach, spleen, kidneys or liver to migrate into the chest cavity, which prevents the lungs from growing to a normal size before birth.
When CDH is the only defect present, severity depends on the position of the liver and size of the lungs (lung to head ratio, or LHR). The liver is present in the chest in more severe cases. In the most severe cases infants may experience long-term issues including feeding difficulties and gastrostomy before discharge. Cases in which the liver is not present in the chest are less severe.
The majority of CDH infants have an isolated CDH defect, or only minor associated anomalies. The CDH team at Johns Hopkins All Children's is aggressive in treating for survival in all of these patients, regardless of the severity of the CDH. A small percentage of infants with CDH also face life-threatening additional anomalies, such as major chromosomal defects, univentricular heart defects or bilateral CDH. These patients face additional complex physiologic issues beyond CDH that are addressed on a case-by-case basis.
Our team is backed by 20 years of study to determine the optimal time to perform surgical repair to allow maximum lung growth in each case. This research includes:
ECMO in CDH: Is there a role? Seminars in Pediatric Surgery. 2017 Jun;26(3):166-170 (Kays, DW)
Improved Survival in Left Liver-Up Congenital Diaphragmatic Hernia by early Repair Before Extracorporeal Membrane Oxygenation: Optimization of Patient Selection by Multivariate Risk Modeling. Journal of the American College of Surgeons. 2016 Apr;222(4):459-70 (Kays DW, Talbert JL, Islam S, Larson SD, Taylor JA, Perkins J)
Outcomes in the physiologically more severe congenital diaphragmatic hernia (CDH) patients: Whom should we treat? Journal of Pediatric Surgery. 2015 Jun;50(6):893-7. (Kays DW, Islam S, Perkins JM, Larson SD, Taylor JA, Talbert JL)
Extracorporeal life support in patients with congenital diaphragmatic hernia: how long should we treat? Journal of the American College of Surgeons. 218(4), 808-817. (Kays DW, Islam S, Richards DS, Larson SD, Perkins JM, Talbert JL)
Long-term maturation of congenital diaphragmatic hernia treatment results: toward development of a severity-specific treatment algorithm. Annals of Surgery. 258(4), 638-44—discussion 644-5. (Kays DW, Islam S, Larson SD, Perkins J, Talbert JL)
Detrimental effects of standard medical therapy in congenital diaphragmatic hernia. Annals of Surgery, 230(3), 340-8—discussion 348-51. (Kays DW, Langham MR, Ledbetter DJ, Talbert JL)
Frequently asked questions about referrals
Below are some of the most common questions we receive about referring a patient to us for care.
To begin the referral process, call us at 727-767-3587. This number is available for either referring physicians or patients. We’re ready to discuss your patient’s case with you to determine the options available.
CDH is a complex condition that can present difficult questions regarding prognosis. We are here to provide a second opinion or discuss options for your patient. For more information or to consult with our team, call us at 727-767-3587.
Once your patient has signed the appropriate releases, you can mail or fax records to:
Johns Hopkins All Children’s Hospital
Attn: Pediatric Surgery - CDH
501 Sixth Ave. S
St. Petersburg, FL 33701
If you are able to send radiology records directly to other hospitals digitally, you may do so. Otherwise, please mail us a disc with those records.
We ask that patients relocate around week 34 of their pregnancy, or about one month before delivery. We typically plan delivery around 38 or 39 weeks, depending on the patient. This is also the time frame when patients and families are eligible to begin staying in one of the Ronald McDonald Houses on our hospital campus. More information for patient families about requesting a room is available here.
Johns Hopkins All Children’s Hospital is located in St. Petersburg, Florida, close to two airports: Tampa International Airport and St. Pete–Clearwater International Airport.
It is important for families to contact us so we can determine their health insurance authorization process or explore alternative funding. Johns Hopkins All Children’s has patient account coordinators who are available to discuss families’ options and answer any questions they may have about their coverage. More information about health insurance considerations and timelines is available here.
Give us a call
To refer a patient or learn more about the Center for CDH at Johns Hopkins All Children’s, please give us a call at 727-767-3587.