Quality and Outcomes - Herma Heart Center
Surgical Survival - Hypoplastic Left Heart Syndrome
Why we measure it - Approximately 8 percent of newborns with congenital heart disease are diagnosed with hypoplastic left heart syndrome (HLHS). Our Herma Heart Center specialists at Children's Hospital of Wisconsin in Milwaukee are recognized internationally for their successful surgical outcomes and groundbreaking home monitoring program that dramatically improves long-term survival rates for infants born with this condition.
About the data - The survival rates for hypoplastic left heart syndrome have steadily increased with each era due to advances in medicine.
Related dimensions of care:
What we're doing to provide the best care:
- Herma Heart Center at Children's Hospital is recognized internationally as a leader in pediatric cardiothoracic surgery.
- Our cardiothoracic surgeons have American Board of Thoracic Surgery Certificates in Congenital Heart Surgery.
- Herma Heart Center has set national benchmarks for surgical outcomes of the Norwood procedure, the first of three operations to treat this condition.
- Families traveling from long distances are encouraged to use our Family Accommodations Program to make travel arrangements and schedule appointments. Children's Hospital has partnered with non-profit organizations Ronald McDonald House and Kathy's House to offer comfortable, "home away from home" accommodations. Local hotel chains on our referral list also offer discounts for families.
Mother and Baby Care:
- The Fetal Concerns Center of Wisconsin can diagnose many birth defects and other health concerns in unborn babies. This program offers counseling and coordinates needed medical care for mother and baby.
- The Froedtert & Medical College Birth Center is housed inside Children's Hospital. This arrangement allows fragile newborns to be taken into surgery immediately and also keeps the mother and baby together. Family members also enjoy the convenience of driving to one hospital location instead of two different medical centers for visitation.
Home Monitoring Program:
"We highly recommend the program. It provides another method of reassurance and allows parents to be more relaxed. Parents who are more informed and relaxed will result in a baby being more relaxed."
Parents of William, who was home monitored from 6/10 to 10/1.
- Children's Hospital is recognized worldwide for pioneering the first interstage home monitoring program to monitors infants with HLHS.
- Before a child with HLHS is released from the hospital, parents are trained how to track their child's weight gain or loss, oxygen levels, fever or any other illnesses that develop in a daily log book. This data is collected during what is called the interstage period, which is the wait time between the completion of the first surgery and the scheduled second surgery.
- Each patient is assigned to an interstage management team which includes a pediatric cardiologist, cardiac intensivist, dietitian, speech and feeding specialist and social worker. Our team collaboration is what makes us a center of excellence in caring for these high-risk infants.
- Parents receive a pager to contact interstage team members immediately to report problems or concerns.
- The home monitoring program identifies changes in your child's health earlier and allows our Herma Heart team intervene faster and improve survival rates.
- Families that participate in the home monitoring program have lower hospital readmission rates during the interstage period compared to other pediatric centers.
- Ensuring normal infant growth during the interstage period is very important when caring for babies with HLHS or other single ventricle conditions. Our specialists have published articles and presented their research and outcomes to other pediatric centers nationwide that show that normal growth rates are achievable when working together with the home monitoring program.
- Our experts formed a Cardiac Nutrition Research Group which is committed to studying the nutritional benefits needed to create improved outcomes for patients with HLHS.
- Our registered dietitians develop effective nutritional feeding plans to foster normal weight gain for babies before and after their first surgery. Feedings may be given orally or through a feeding tube. Dietary formula requirements are customized for each child on an individual basis.
- Our lactation specialists are available to assist and support mothers with hospitalized infants.
- Our HLHS Clinic is run by dedicated pediatric nurse practitioners who work closely with our doctors. Appointments usually last about 2 hours. Each appointment focuses on weight gain or loss, food intake and growth progression. The infant is seen by all of the specialists on their interstage team.
- Our Developmental Follow-up Clinic offers early intervention services for infants and toddlers that have undergone heart surgery. Follow-up evaluations are scheduled every six months up through age three. A highly specialized developmental pediatrician coordinates care and evaluates your child during each follow-up visit.
- Mixed Venous Oxygen Saturation Monitoring After Stage 1 Palliation for Hypoplastic Left Heart Syndrome: lessons learned from 116 consecutive patients
- Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: lessons learned from 115 consecutive patients.
- Normal Interstage Growth After the Norwood Operation Associated with Interstage Home Monitoring
Patients and families:
- Take a virtual tour of the hospital before scheduling a first appointment.
- Call your insurance company before your visit. You may need a referral to see our specialists.
- Come 15 minutes before your child's appointment so we can gather necessary information from you before your child sees the doctor.
- Bring a list of questions to your child's appointment. We are happy to answer any questions or concerns you have during the visit.
- Bring a full list of your child's medicines. Be sure to include over-the-counter medicines like vitamins and supplements.
- If you cannot keep an appointment, please reschedule. Call Central Scheduling at (877) 607-5280 or (414) 607-5280 as soon as possible so another child can be seen.
- Referring physicians can access our specialists for consultation or transport 24 hours a day. Call our physician referral line at (800) 266-0366.
- Health care providers from outside of our southeastern Wisconsin service area are encouraged to use our web-based
e-Consult service. This service is available for non-urgent patient cases only and gives providers access to our specialists to review patient cases, obtain medical advice or second opinions, and receive care recommendations for rare symptoms and illnesses.
e-Consult is not to be used by the general public, parents/guardians or families.
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If you have questions about this Web page, email us or call (414) 266-6556.