There is a CHD survey initiated by California Heart Connection circulating around cyberspace, asking parents of children born with congenital heart defects to answer questions regarding their experience with their child's diagnosis. The hope and goal of this survey is to provide valuable insight to physicians who are charged with handing this diagnosis to parents who most likely know little, if anything, about CHD's.
One of our fabulous nurses at Luke's cardiology office just returned from a pediatric cardiology conference put on by CHOP and she shared this encouragement from her attendance: Doctors ARE wanting this information. They ARE thinking about how to relate to parents during the incredibly stressful time of diagnosis, about what information is too much or too little, and they DO care about minimizing parental stress.
If you haven't already, you can take the survey through this link (it takes about 20 minutes to complete).
As I typed and clicked my way through the survey, I was surprised at the flood of recall (mostly positive) of how we received the news of Mr. Luke's extra-ordinary little ticker.
I thought about our ultrasound technician, who was brave enough to go with her gut and send us to a specialist, even though what she was seeing admittedly could have been chalked up to Luke's activity and position.
I thought about Micki, our first fetal ultrasound technician, who was gentle, optimistic and made us comfortable (even laugh!) during an agonizing 45-minute echo.
I thought about how Dr. Stefanelli didn't overwhelm us with statistics, surgical procedures, diagrams, or medical jargon. I believe he sensed we were overwhelmed enough.
I thought about the child-life specialist at Children's Hospital, who sensed my inability to emotionally handle the full ICU tour before Luke was born, and gently led us back out.
I thought about Dr. Stefanelli calling us at home on Christmas Eve, simply to let us know he was back in town and if we had any last-minute questions as Luke's due date was quickly approaching.
I thought about how well Dr. Lee (my OB/GYN) and Dr. Stefanelli communicated as we formulated a birth plan. I appreciated deeply how well they both listened to me and to each other.
I appreciated Dr. Stefanelli giving us his pager number, knowing full well we would use it — even on weekends and evenings.
I thought about how Dr. Cohen portrayed such confidence in his abilities as a surgeon, yet maintained that until he could actually see Luke's heart in the O.R., he wasn't going to give us definitives. His willingness to change direction in the O.R. and make game-day decisions sky-rocketed his trustworthiness in our minds.
That is a lot of positive experiences in learning about Luke's heart defect. There is very little I would change. But I couldn't forget our experience with our perinatologist.
We scheduled a high-level ultrasound with this maternal-fetal specialist after Luke's original diagnosis of AVSD (atrio-ventricular septal defect). With this diagnosis came a 40-50% chance of Luke also having Down Syndrome. During the span of the 60 minute ultrasound, this doc made three verbal mistakes. Verbal mistake #1: Don't tell the parents of an unborn child with medical issues how many marriages you've seen dissolve in situations like this. Verbal mistake #2: Don't yell out into the hallway for another doc to come take a peek at the monitor because the picture is so interesting to you. Verbal mistake #3: Do not, under any circumstances, call the unborn child with a unique heart an "odd duck".
Obviously, this doctor didn't have the greatest bedside manner. Some doctors, no matter how good they are at what they do, don't and I would guess most aren't taught in medical school the intricacies of dealing with a difficult diagnosis. I took the survey because I believe that doctors have good intentions and good hearts and with this feedback from parents, they can only be better equipped to say what needs to be said and leave out what doesn't.