Continuity of Care for the Fetal Cardiac Patient

The role of the pediatric cardiac clinic has evolved with the advancement of medical technology over the last few years to include a different kind of patient in the pediatric cardiac clinic: the fetal patient. Expectant mothers are screened at area clinics for risk factors for delivering a baby with a congenital heart defect and referred to the pediatric cardiac clinic for additional testing and treatment. Some risk factors include alcohol or drug exposure including chemotherapy, gestational diabetes, genetics and consanguinity. A team of experts and support staff are assembled and available to the cardiac fetal parents to assist them with their unexpected journey. Preparations are made in advance of the delivery of the cardiac newborn which improve the infants' outcome after delivery.

Expectant mothers are referred to our clinic by Obstetricians in the community that have a suspicion for an abnormal fetal ultrasound or that have risk factors that could cause a congenital cardiac defect in the fetus. Women at high risk for fetal cardiac defects such as mothers of advanced maternal age, gestational diabetes and family history of cardiac defects are screened by fetal echocardiography so that the family and cardiac team can identify the heart defect and prepare for the delivery and treatment of the newborn. The fetal echocardiogram is painless and non-invasive and gives detailed images of the fetal heart. The fetal echocardiogram is done by highly specialized sonographers that use a wand-like camera over the mother's abdomen to obtain detailed images of the fetal heart in approximately one hour. The fetal echo is read immediately by the Echo cardiologist and results are discussed with the family. With the assistance of an Advanced Registered Nurse Practitioner, the cardiologist explains the normal fetal heart anatomy and function and then reviews the diagnosed fetal heart defect with the family including options for treatment, including palliative care if necessary. This is all done in the first visit to the Pediatric Heart Institute.

One in 100 newborns are born in the United States with a congenital heart defect. It can be frightening to learn your child has a congenital heart defect. The Pediatric Heart Institute at Joe DiMaggio Children's Hospital has developed a personalized notebook for the fetal cardiac patients. Learning about a child's congenital heart defect is an ongoing process that continues throughout the patient's lifetime. The notebooks are put together by the staff and are meant to assist our patients on the journey from diagnosis through their surgeries and maintenance care.

Every child is different and every heart condition has its own unique plan so the notebooks are a means for the families to educate themselves, access resources, file cardiac catheterization reports and surgical reports, track growth and nutrition and have their contacts at their fingertips. The notebook is brought to each visit at the Pediatric Heart Station to be updated and can be taken on trips with the patient so that the entire cardiac history of the patient is on hand in case of an emergency. The notebook has input from all of the services involved in the patient's care including dietary, physical therapy, surgical team, and cardiology support staff.

The introduction section of the notebook is written to the fetal patient and family and includes answers to common questions that are often asked by the parents such as where the delivery will take place, whether the baby can be delivered by cesarean section or lady partslly, what to expect at the delivery and when the baby can be held and fed. An introduction and tour are given to the fetal parents of the Neonatal Intensive Care Unit and of the Pediatric Cardiac Intensive Care Unit. This tour is given as the parents get closer to the delivery date and after a delivery plan has been developed by the obstetrician and the fetal echo cardiologist. The tour is done by the fetal coordinator in conjunction with the Advance Registered Nurse Practitioner. Introductions are made with all of the cardiac team that will soon be involved in the care of the newborn congenital heart patient including social workers, psychologists, nutritionists, child life therapists and pediatric cardiac nurses.

With each subsequent visit to the Pediatric Heart Station as a fetal patient the family is expected to bring the notebook so that the information can be updated and kept current. Once the baby is born the notebook becomes even more valuable to the family as it becomes more of a workbook that is used frequently for the services that are involved in the infant's care. Growth and nutrition is one particular section where the families can record daily weights, concentration, volume and frequency of feeds and any feeding issues the infant may have. The daily record in the cardiac notebook can then be referred to at office visits or via telephone with the practitioners.

The feedback we have received from our families has been extremely positive regarding the functionality and usefulness of the cardiac notebook. We have added a section including a place to take notes with a yearlong calendar so the patients can keep track of their appointments. We have also added a section for medications including color coding for patients and families that are illiterate. Each cardiac notebook is personalized according to the patient's diagnosis, level of ability and plan of care. We have seen that the families feel more in control of their clinic visits and are better informed regarding the complex diagnosis of congenital heart defect. Our plan for the future is to download all of the information to a thumb drive for the patients who have access to a computer and are computer literate. The memory stick is much more portable and can be updated more quickly. We will continue to evaluate and adjust as technology advances and hope to further improve the quality of the care we deliver in the Pediatric Heart Institute at Joe DiMaggio Children's Hospital.