Seeking greater opinions...

I took Rocco in for an appointment on Friday with a pediatric cardiologist. I had to do it. Not yet knowing why Matteo died brings us so much worry. I needed to have Rocco's heart tested and for someone to give me the slightest confirmation that the same thing is not going to happen to Rocco.

The appointment was difficult, but I absolutely loved the physician.

I had to tell her why I was there. That my other baby just died... Rocco's twin. That we didn't know why he died... but he died in his sleep. She was so kind. She listened to me. I cried and tried to explain every detail of their health history over the past 18 months while fighting tears. I brought documentation of medications they had been on, dates, etc. She clearly felt bad. She asked a lot of questions. I asked her what heart-related problems could have allowed Matteo to die on us in his sleep. She explained a few possible causes.

She spent at least a half hour talking with us prior to the tests and another 20 after all the tests. She spent at least 45 minutes taking photos of Rocco's heart via ultrasound. She also ran another test where he was hooked up to numerous monitors via stickies all over his chest, arms and legs. All of the tests were beyond challenging as we were doing anything possible to get Rocco to sit still and not rip all the stickies off his body. Matteo would have sat there like a good little guy. He wouldn't have liked the stickers and he probably would have fought those a little. But, he would have sat there and allowed me to soothe him.

The test results came back great. Rocco's heart function is normal and good. The doctor said that depending on whether or not Matteo's cause of death ends up being a genetic abnormality of the heart, then we would also need to run a few more blood tests on Rocco.

After completeing this appointment, I sent a long email to two physicians who I've worked with on numerous occasions. Two physicians who are highly respected in the world of pediatric cardiology. I needed their opinions on why Matteo would have died, if in-fact he did die due to a heart related issue.

I wasn't sure I'd hear back from them. They are BEYOND busy and have crazy, crazy schedules. But, they both emailed me back within three hours of my email. Part of me was shocked at how quickly they both responded. And, part of me knew they would... because I always sensed their compassion. Once again, I found myself feeling so grateful for being a part of this wonderful and well-respected institution.

Below is what they had to say (personal info x'd out).

Jodi:

I am so sorry for your loss. I know that you must feel guilty for not checking him more often, but from the sounds of this, you did all the right things and should not feel in any way responsible.

There are a few cardiac diseases that could possibly have caused sudden death in this situation. One is an abnormal heart rhythm, some of which can be due to a genetic mutation. These mutations can be tested for if a sample of tissue can be saved by the coroner's office for DNA analysis. Second, there is the possibility that your son developed an infection of the heart known as myocarditis. This could have been responsible for the fevers, but it could also have occurred due to the same virus that causes the Hand-Foot-Mouth disease back in May. Sometimes these viral infections of the heart can be subclinical for months before a child develops any symptoms. The microscopic sections from the autopsy study would definitately show this. Lastly, there is a rare congenital malformation called anamolous left coronary artery and this should be seen on the general part of the autopsy. You can ask the coroner whether he/she has determined the origins of the coronary arteries, which is pretty routine.

Once you have the final results of the autopsy, if you wish I would be willing to review them with you and help to determine whether there is anything else worth doing, and whether other tests are required for the other boy.

XXX

xxxxxx xxxxxxxxx, M.D., Chief, Division of Pediatric Cardiology
Lucile Packard Children's Hospital at Stanford
Professor of Pediatrics
Stanford University





Dear Jodi,

I am very sorry for what has happened and if there is anything I can do, please don't hesitate to call. Dr. xxxxxxxxx has already mentioned the more common causes of sudden death related to the heart and is correct about what the studies and coroner can do to evaluate for the coronary abnormality. I know Dr. xxx (who examined Rocco on Friday) and believe that she is a good pediatric cardiologist. If you have questions regarding her echocardiographic evaluation, however, I would be happy to help you, including re-reviewing her study.

We as parents and spouses always feel a sense of "what could I have done differently" but I truly believe that you and your husband did nothing wrong. Uncommon things happen commonly and what you have described sounds very uncommon. I know saying these things don't take the pain or guilt away but it is true. Please let me know if I can be of any help now or in the future. If you need to talk to someone, know that I am always available and you can page me at anytime (xxx-xxx-xxxx).

Sincerely,

xxxxx

xxxxxxxx xxxx, M.D.
Director, Pediatric Heart Transplant Program
Lucile Packard Children's Hospital at Stanford
Associate Professor of Pediatrics
Stanford University