Complex Congenital Heart
Help for parents of babies with complex heart problems
Learning you are having a baby is an exciting time. Learning you are having a baby with a complex heart problem is a challenging time, too. At Inova Children's Hospital we have developed a Single Ventricle Program to help you and your family through this journey.
There are several types of single ventricle heart problems your baby could have. They include:
-
Hypoplastic left heart syndrome (HLHS)
- Variations of HLHS with hypoplastic (small) aorta or small left ventricle
- Double inlet left ventricle
- Pulmonary atresia with hypoplastic right ventricle
- Unbalanced atrioventricular canal defect
Our Single Ventricle Program is designed to help you and your baby go home after surgery, safely and with extra support. The following information explains the various parts of our program.
Home monitoring
Our home monitoring process is designed to find and prevent problems in fragile babies at home between their first and second heart surgeries. We have learned that a simple daily check can help us find important problems early. Each day you will need to weigh your baby on a baby scale and measure the oxygen in the blood using a Band-Aid like device. You will write the weight and oxygen level in a notebook. You are asked to call your cardiologist if your baby does not reach the goals for weight gain and oxygen levels. We will teach you when to be worried and when to call.
CPR for home
You and anyone who cares for your baby will learn cardiopulmonary resuscitation, better known as CPR. You will be given a CPR kit with a doll and a DVD from the American Heart Association which is yours to keep. You will take it home and we ask you to share it with other family members and caregivers.
Cardiac nutrition team
Good nutrition is a very important part of helping your baby to do well after surgery. A group of specially trained staff (nurses, dietitian and speech therapist) will work with you to get your baby to grow and eat before going home from the hospital.
Many babies with single ventricles have trouble eating all their food by mouth. If this is true for your baby, you will learn about feeding your baby with a tube that goes through the nose (a nasogastric or NG tube) or directly into the stomach (a gastrostomy tube or GT). Tube feeding may be the best method of providing your baby a healthy diet for the best growth and development.
If you would like to breastfeed, we want to support you. Breast milk provides many benefits for your baby. Our lactation and feeding teams are here to help. Breastfeeding may not be possible right after surgery. We still prefer your baby to have breast milk, if possible. You can pump the milk and we can give it to your baby. We may need to add extra calories to the milk to help your baby grow. We may need to put your milk through a tube to help your baby eat. We will make every effort to help you and your baby to breastfeed, but this may take some time.
Rooming in before you go home
To be sure you are comfortable caring for your baby at home, we will ask you to spend at least a full day and night caring for your baby before you leave the hospital. We will have you:
- Give all the medicines your baby will take at home
- Feed your baby using whatever equipment is needed
- Practice all the skills you will need to care for your baby (weighing and measuring the oxygen level, for example)
You will need to plan ahead for time off from work or for childcare for other children while you stay at the hospital. If you are at the hospital a lot, set a goal to learn one thing about caring for your baby every day. This will make rooming in easier.
Single ventricle clinic
Once you and your baby go home, you will have alternating appointments with your primary cardiologist and our single ventricle clinic. The clinic visit includes a cardiology visit but also has a dietitian and speech therapist at each appointment. This helps to make sure your baby continues to grow and progress from the first surgery to the second surgery. The clinic is located on the Inova Fairfax Medical Campus.
Our team
Members of Inova's Single Ventricle Program team include:
Cardiac surgeons
James D. St. Louis, MD
Cardiac Surgeon
Lucas Collazo, MD
Cardiac Surgeon
Cardiologists
Jennifer B. O’Neil, MD
Single Ventricle Clinic Cardiologist
Harish Rudra, DO
Single Ventricle Clinic Cardiologist
Single Ventricle Program team members
- Chuck Bailey, PA – Physician Assistant
- Shelly Fleischer, PA – Physician Assistant
- Kristine Lewis, MSN, RN – Single Ventricle Clinic Coordinator
- Melissa Eartherly, FNP-BC – Fetal Care Center Lead
- Erin Caulfield, BSN, RN, IBCLC – Fetal Care Center Patient Navigator
- Kimberly Hill, MS, CCC-SLP – pediatric speech-language pathologist
- Karyn Theis, RD – pediatric dietitian
- Shripriya O’Neill, NP
- Lauren Stoller, NP
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