High Risk Clinic
Bringing a newborn home is a stressful time. If your baby has special needs, like single ventricle heart disease, it’s even more stressful. That’s why we established the High Risk Clinic in 2012.
The High Risk Clinic helps monitor babies with heart disease. From the time they’re discharged from the hospital up until their second surgery. (This time period is commonly referred to as the “Interstage”)
What To Expect
Once your baby goes home, the High Risk team will remain in close contact with you. The program’s nurse practitioners will call weekly to see how you and your baby are doing. They will ask questions about oxygen saturation, feeding, and weight gain. You can call us at any time if you have questions or concerns.
As part of the program, your baby will have cardiology clinic appointments about every two weeks. These appointments alternate between the High Risk Clinic and your primary cardiologist. As part of these visits, your baby will also have an echocardiogram at least once a month, and periodic electrocardiograms (ECGs) and chest X-rays as needed. Additionally, you will also have regular visits with your baby’s pediatrician.
Your baby will have various tests performed during the Interstage period. These may include the following:
- Chest X-ray
- Holter Monitor
- Cardiac Catheterization
- Cardiac MRI or CT Scans
We want your baby to have the resources they need early on. Before you leave the hospital, your baby will have an assessment by physical therapy. You will also receive developmental plans and be referred to the Neurodevelopment Clinic.
- Routine Health Care:
While your baby’s heart may be at the forefront of your mind, your baby needs. regular checkups, too. This includes routine vaccinations and visits to your baby’s primary care doctor. We also recommend close family members get a flu shot to protect your baby from getting the flu or other illnesses. We also recommend your family members update their DTaP (Diphtheria, Tetanus, and Pertussis) status.
Graduating from the High Risk Clinic:
After your baby’s second heart surgery, at about 4 to 6 months old, they will be out of the Interstage period. You’ll transition out of the High Risk program but will continue to see your baby’s primary cardiologist. Every baby’s course after surgery is different, but often, clinic appointments are less frequent and home monitoring isn’t needed. anymore.
To help with this transition, one of the High Risk Clinic nurse practitioners will continue to call once a month until your baby’s first birthday to make sure your questions are answered. But remember, you are never alone. If you have questions or concerns, you can always contact us and someone will help you know what to do.
The High Risk program was developed from our involvement in the National Pediatric Cardiology Quality Improvement Collaborative: (NPC-QIC). That program has shown that daily home monitoring of oxygen saturation, weight, and “red flag” symptoms can decrease the occurrence of complications death during the Interstage.
Our team takes a collaborative approach when providing care for your child. Our team of doctors and nurse practitioners who work closely with speech therapists, nutritionists, and other specialists to help your baby.
There are several local and national resources available to help support your baby and your family:
- Family to Family
volunteers who have children born with heart disease, including single ventricle heart disease. They are available to speak with you regarding their experiences having a child with single ventricle heart disease, either in the hospital or by phone. We can arrange a meeting, if you’re interested.
- “It’s My Heart”
A book developed by the Children’s Heart Foundation as a resource for patients and families affected by congenital heart defects. It describes various heart defects and explains common tests, surgical procedures, and treatments for congenital heart disease. We will give you a copy for free—just ask your nurse practitioner.
- National Pediatric Cardiology Quality Improvement Collaborative
A group of pediatric cardiology centers across the country who share knowledge to help support patients who have undergone the Norwood procedure.
- Intermountain Healing Hearts
An organization in the Intermountain West for families with all types of congenital heart disease.
- Sisters by Heart
A national support group for families with children with hypoplastic left heart syndrome.