A little Hope

Found this information at http://www.fetalcarecenter.org/conditions/cdh/cdh-details.htm.  It describes the integrated approach that this hospital and UCSF apply to patient therapy.  The last paragraph is what I'm really clinging to right now.

The Fetal Care Center CDH Team offers a unique management strategy that begins with the prenatal Congenital Diaphragmatic Hernia / CDH prognostic profile and continues through delivery, care in the NICU and post-discharge and long-term follow- up with continuity of care provided by the same team of physicians. Principals that characterize the CDH Team management strategy include:

• Integrated continuity of care
• “Gentilation”
• Aggressive management of pulmonary hypertension
• Echo-cardiographic assessment and support
• Delayed surgical repair
• Bronchoscopic evaluation
• Aggressive nutritional support

The Congenital Diaphragmatic Hernia / CDH Team includes an experienced multi-disciplinary team of:

• Surgeons
• Neonatologists
• Interventional cardiologists
• Advanced practice nurses
• Respiratory therapists
• Occupational therapists
• Speech therapists
• Nutritionists

Our family-centered approach encourages parents to attend and participate in every aspect of their child’s care, including family-centered rounds, which are conducted daily at the patient’s bedside.

Our CDH Team works closely with referring obstetricians and maternal-fetal medicine specialists to facilitate prenatal management. We also work closely with pediatricians who will be assuming primary care once the baby has been discharged home.

This integrated approach has achieved survival rates for isolated CDH of 92 percent, and 100 percent for fetuses with LHR ≥ 1.0.