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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.
Sarah Tabbut, MD: If you come to the Cardiac ICU, it is always moving. It's always — there's always a huge energy there. And the group of people that work in there all have this incredible pride of taking care of these really sick kids, providing emotional support for the family.
Denise D. Donaghue, RN: Once the baby gets to the intensive care unit, all of these weeks and months of planning and anticipation, now here the baby is in front of us, and we have real information to deal with. We have a real plan. It's not theoretical surgery. The baby's going for surgery. You have a date. You have a time. It's a very different level of stress for families.
Sarah Tabbut, MD: So when the family walks in and sees their child, if the baby's been born uncomplicated and just started on its medication, it's gotten its lines and come over, it looks actually very comfortable, and I think that that transition's pretty easy. If the baby's gotten sick, then the family has been told by phone, or they've been there, about the baby needing a breathing tube. But they may not have seen that, and that's a much more difficult transition, and we're very sensitive to that.
Shane Thrush, parent: To see her there, all that stuff plugged into her, it was overwhelming, but, I mean, once they let us hold her, it changed it back to more of a normal situation.
Anthony Ramsay, parent: You know, it is overwhelming, it's such a little, you know, it's a little baby laying there.
Andrea Thrush, parent: She was comfortable and not in pain of any sort so it was okay in that respect.
Sarah Tabbut, MD: The nurses are incredibly good about transitioning the family to life in the ICU.
Lynne Ramsay, parent: We got to know so many nurses because we were always there, you know. We really didn't leave.
Anthony Ramsay, parent: Yeah, a couple times they're like , "Look, you guys go. I'll hold him. I'll sit in the chair. I'll rock with him." You know, "Go down, get something to eat. Go get a cup of coffee."
Shane Thrush, parent: She was in good hands, like, you didn't feel like you had to be at the bedside every minute because you just kind of had a sense of — they know what they're doing.
Sarah Tabbut, MD: The nurses try to provide consistency. So if they're working several days in a row, they always try to have the same patient. They try to have the same patient before surgery and after surgery. Each child has one ICU attending that's kind of keeping an eye out for that particular baby. So they know, you know, who sent the baby here. They know the parents they do the most — you know, most of the conversations with the parents. They know the social situation for the family. You create a bond with the family so to speak. There's a lot of camaraderie between parents. Once they've sort of adjusted to being in the ICU, you'll often see them getting coffee with another set of parents. And I think there's a connection that they make with the other parents at that time, which is pretty strong.
Trai Lamborne, parent: Concern for yourself, you're concerned for other families.
Donna Lamborne, parent: You start to bond with people pretty quickly and we — you spend a lot of time together, you know, in the waiting rooms, sitting at the bedside of the different childs —
Trai Lamborne, parent: Days of surgery —
Donna Lamborne, parent: right, days of surgery.
Anthony Ramsay, parent: The amazing thing was how many kids there were in the ICU when we were here. Like almost every room was full. You know, it really looks like you're not in this alone.
Sarah Tabbut, MD: The amount of time the babies have to stay in the ICU depends on what their heart problem is. I usually tell parents that if the baby's not a premature baby that's been diagnosed without getting sick, that the expectation is that they'll probably be the hospital somewhere between 10 days and two weeks. That's our average. But I always mention to the family that it could be longer because you tend to put the two weeks in your head and then two weeks and one day is, like, terrible. But it could easily be two weeks and one day. It's not like every day your baby gets better. Some days are a little set back. And that can be really hard because you kind of have a goal of when you're going to go home and something sets you back, that can even be more difficult that the baby's surgery itself.
Denise D. Donaghue, RN: And this is where the social worker works very closely with the nursing staff in the Cardiac ICU. This is the team caring for the baby before surgery, preoperatively in the ICU. So these are the people that know the baby right from birth, have been with the family right from birth. For them to be interfacing with the social worker who's been working with the family, again, brings that team together around that family. She also is a key person in just helping families sort out logistics, the real concretes of, "Where am i staying when I get here?"
Donna Lamborne, parent: I had a room. You know, you can ask to stay and just put in — you have to fill in a little slip every night to see if they can allow you to have a space there and fortunately I was able to stay.
Anthony Ramsay, parent: There's actually showers on the floor. So, you know, even just taking a shower you just feel refreshed and, you know, a little more energized.
Sarah Tabbut, MD: One of the great things about working in the ICU is the patients and their families. The families are — no matter what they're struggling with — if it's the baby, if it's something at home, you know, they're always a pleasure to work with, they really are. And it is such — it's so rewarding to see kids get better and go home.
Contact the Fetal Heart Program for more information