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Doctors and nurses talk about the Fetal Heart Program at The Children's Hospital of Philadelphia. From referral and diagnosis, planning and delivery to treatment and the future, doctors and nurses are making great strides in the diagnosis and treatment of congenital heart defects. Use the links below to navigate through the series.
Denise D. Donaghue, RN: Any fetus that is diagnosed with congenital heart disease -- we follow them at least every four weeks.
Jack Rychik, MD: We have families return for frequent evaluation in a serial manner using fetal imaging and that's an opportunity to communicate back to the patient, but also an opportunity for us to provide updates to other members of the team as we go forward.
Donna Lamborne, parent: We came each month for an ultrasound. Dr. Rychik personally came in and met with us each time.
Denise D. Donaghue, RN: Through the course of serial fetal echocardiography, we are able to follow that fetus's heart to see how it's developing, what changes are happening, because this is a very dynamic period.
Zhiyun Tian, MD: Every picture is a new story -- what the baby try to tell me.
Peggy McCann, RDCS: Things change during the course of a pregnancy. As a baby grows, things change. Not only do the legs and abdomen and brain fortunately grow, but the heart can change, and we want to know as close to delivery what to expect -- how this heart is going to function.
Denise D. Donaghue, RN: We want families to have an opportunity to learn as much as they can about the baby's heart and the defect and what the plan for management is going to be, and we find that we're able to build on our discussions every time we see a family.
Andrea Thrush, parent: And we went from a huge powerful, you know, diagnosis to a plan.
Jack Rychik, MD: Families will meet with the surgeon. They'll meet with intensivists.
Sarah Tabbut, MD: The families also can tour through the ICU so they have an idea of where the baby's going to come. And if they'd like, they can meet with any of the practitioners who will be taking care of the baby.
Peggy McCann, RDCS: So by those last visits these families, they really come to know us well. we know them well. We know the other things that they're dealing with -- other children, travel, things like this, and we make it as easy as we can.
Sarah Tabbut, MD: Some families are really worried about the surgery itself. Some families are worried about -- is the baby going to be able to eat by itself or is it going to need a feeding tube? Some families are worried about, you know, the 3-year-old sibling. How's that child going to do? Some families are worried about the logistics of getting back home. So everybody's got, you know, different concerns, and we have people to help with all that stuff.
Denise D. Donaghue, RN: We have a social worker that works specifically who's dedicated to the fetal heart program. And she's able to meet with families before delivery of the baby, but she's going to be an important person to them in the ICU. So that's continuity of care.
Jack Rychik, MD: It's important for other siblings to be brought into the circle of knowledge.
Jack Rychik, MD: And that's where child life specialists come into play.
Denise D. Donaghue, RN: To make them feel important and know how they can help contribute to the baby getting well and make sure that they do okay through this entire process with the family.
Sarah Tabbut, MD: We do provide a lot of support for the mothers who want to provide breast milk.
Denise D. Donaghue, RN: A lot of moms come to us thinking, "I'm just not going to be able to breast-feed my baby." That's absolutely not true.
Sarah Tabbut, MD: Not only are the nurses at the bedside very facile and educated in this, but there's also a whole lactation support system.
Denise D. Donaghue, RN: We have a lactation specialist that's going to work with those mothers, and then that lactation specialist will work with the mother after the baby's born in the ICU. So again, it's that continuity of care.
Donna Lamborne, parent: The experience was unbelievable. We felt as though we could call anybody here, at any point to get information, ask any kind of question.
Jack Rychik, MD: We want to be able to create a situation where as much information can be conveyed, knowledge can be transmitted, and the hands of these families held as they go through this process.
Contact the Fetal Heart Program for more information