Quality Reports - Herma Heart Center
Surgical Survival - Hypoplastic Left Heart Syndrome
Why we measure it - Hypoplastic left heart syndrome is one of the most complex congenital heart defects. Less than 20 years ago, most infants born with this defect died. Today, repairing this defect and other complex single ventricle lesions accounts for a large part of the work we do.
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Patient Impact
Patrick Atwell, pictured at age 5, was the first child to undergo continuous cerebral perfusion during the Norwood procedure to treat hypoplastic left heart syndrome. Using this technique, Patrick's circulatory arrest time was drastically reduced during surgery to potentially minimize the impact on neurodevelopment. This strategy is being further evaluated through research studies. | About the data - At the Herma Heart Center, each era had significant advancements in preoperative, surgical and postoperative management techniques that are reflected in the improving outcomes, with survival rates over 90 percent since 2000.
What this means - Herma Heart Center has the best published survival rates worldwide for treating hypoplastic left heart syndrome (see Tweddell JS. Hoffman GM. Mussatto KA. Fedderly RT. Berger S. Jaquiss RD. Ghanayem NS. Frisbee SJ. Litwin SB. Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: lessons learned from 115 consecutive patients. [Journal Article. Research Support, Non-U.S. Gov't] Circulation. 106(12 Suppl 1):I82-9, 2002 Sep 24). The center has set national benchmarks for surgical outcomes of the Norwood procedure, the first of three operations to treat this defect, and has been a pioneer in development of monitoring tools that have become standard practice throughout the world.
Related dimensions of care:
 
What we're doing to provide the best care:
- We continue to investigate and develop better perioperative techniques to improve safe recovery for children with hypoplastic left heart syndrome, including drugs that minimize the effects of heart-lung bypass and novel non-invasive tools to measure how blood is flowing to the body as a gauge of heart recovery.
- Through our Fetal Concerns Program, we can diagnose most heart defects in unborn babies and offer counseling and coordinated medical care for mother and baby. This allows families and staff time to anticipate needs and plan care, which improves the care provided at birth.
- The Froedtert & Medical College Birth Center is located inside Children's Hospital to reduce the time it takes to get a fragile newborn into surgery. Research shows outcomes improve when the delivery room and operating room are close together. This also offers families the added convenience of having mother and baby hospitalized near one another.
- We established an access and feedback work team to make sure patients and referring physicians always have easy access to our facilities and specialists. Our goal is to communicate with and transfer care back to the patient's community physician for seamless follow-up and long-term care.
- We have a highly specialized Children's Transport Team available 24 hours a day to stabilize and transport seriously sick and injured infants and children to our center. More than 1,500 transports are provided each year. In collaboration with Herma Heart Center, a mobile ECMO program was developed, making Children's Transport 1 of only 4 transport programs in the country to transport children on extracorporeal membrane oxygenation, a type of heart/lung bypass.
- We continue to investigate new techniques to improve our ability to stabilize and recover infants with hypoplastic left heart syndrome, including the use of novel perioperative monitoring techniques and special medical therapies.
- We initiated a home monitoring program in 2000 that dramatically improved infant survival rates after patients were discharged home following hypoplastic left heart surgery. We train parents to measure fluid intake, weight gain or loss and oxygen levels daily. Clear guidelines allow parents to provide objective data to clinical staff, which lead to earlier interventions if problems arise.
- We offer a special developmental follow-up clinic for children with serious heart conditions to identify any problems as early as possible and provide support as necessary.
Patients/Families - If your child is being treated for a heart defect:
- Be an advocate for your child. Participate in daily bedside clinical discussions, provide any information about your child that may be helpful to staff.
- Follow medical instructions fully and carefully before and after surgery.
- Ask questions if you don't understand the plan of care or if you are not sure how to care for your child at home.
- Attend any and all follow-up appointments.
If you have questions about this data or information, e-mail us or call (414) 266-6726.
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