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Infant born with dilated cardiomyopathy
Hello. Hoping you can give me some insight. I am 37 and just lost our daughter 2 months ago. At a 36 week sonogram we found out her heart was grossly enlarged. Delivered the same day to access. She didn't have much movement and we never saw her with her eyes opened. The only problem in my pregnancy was gest diabetes which was diet controlled. After we almost list her after the first day she was placed on ecmo. Her abdomen was enlarging and found her liver had ruptured from the heart working so hard. She had abdominal surgery which removed a portion of intestine that had died off and that part was fixed. They finally got her heart into rythem after shocking it and that stayed normal. They thought her fingers were long and she was 95% for height. Waiting on genetics for an ehlers danlos syndrome or marfan but we know of no known cases in the family. Any ideas??? We are just lost and need answers!!
MEDICAL PROFESSIONAL
I would recommend that the records be reviewed by one of our cardiomyopathy cardiologists. The best way to do this is to contact one of our nurse navigators through this link: http://www.chop.edu/service/cardiac-center/our-services/nurse-navigators.html One of them could help you work with this.
What would you charge to review her records? I am out of state in illinois but could send to you
MEDICAL PROFESSIONAL
Dear Tonic,
The problem is that dilated cardiomyopathy has a multitude of genetic etiologies as well as other reasons. Without knowing all of the information about what happened, the list could be quite long AND we may never get all of the data available. Certainly, you are welcome to get a second opinion and meet with a pediatric cardiologist who is an expert in cardiomyopathies, which makes sense if your cardiologist is not comfortable in further evaluation at this time.
The problem is that dilated cardiomyopathy has a multitude of genetic etiologies as well as other reasons. Without knowing all of the information about what happened, the list could be quite long AND we may never get all of the data available. Certainly, you are welcome to get a second opinion and meet with a pediatric cardiologist who is an expert in cardiomyopathies, which makes sense if your cardiologist is not comfortable in further evaluation at this time.
I really appreciate your insight into everything our pediatric cardiologist has basically just said she had dilated carsiomyopathy and thinks it is either due to the cause of a genetic tissue disorder or metabolic reasons...I just don't want to stop until I find out what exactly happened!! After the genetics come back do you do any outside research if I have all of mine and her paperwork and files??? Thanks so much I really appreciate all of your answers!!
MEDICAL PROFESSIONAL
Dear Tonic,
The age of 37 years is considered by obstetricians to be "advanced maternal age", but only by 2 years. Therefore, there is not a specific age concern as long as typical screening and monitoring occurs during the pregnancy. That said, there are no guarantees; 4% of all babies born have some typie of birth defect, so it is more common than most folks realize. Diabetes is felt not to cause cardiac issues if there is good glycemic control, which it sounds like you had. Vascular type Ehlers-Danlos syndrome (also known as Type IV) can cause rupture of blood vessels, as well as certain other organs. However, long fingers is not necessarily the giveaway here. Marfan syndrome also causes aortic dilation and severe mitral valve prolapse in the infantile form, but that's not what you're describing. Although the bloodwork came back as no viruses present (assuming the right viruses were looked for), it certainly could have been some sort of viral myocarditis. I would definitely meet with your OB/GYN and pediatric cardiologist, and discuss these issues further in depth to get them explained more, especially once you get the rest of the genetic testing back.
The age of 37 years is considered by obstetricians to be "advanced maternal age", but only by 2 years. Therefore, there is not a specific age concern as long as typical screening and monitoring occurs during the pregnancy. That said, there are no guarantees; 4% of all babies born have some typie of birth defect, so it is more common than most folks realize. Diabetes is felt not to cause cardiac issues if there is good glycemic control, which it sounds like you had. Vascular type Ehlers-Danlos syndrome (also known as Type IV) can cause rupture of blood vessels, as well as certain other organs. However, long fingers is not necessarily the giveaway here. Marfan syndrome also causes aortic dilation and severe mitral valve prolapse in the infantile form, but that's not what you're describing. Although the bloodwork came back as no viruses present (assuming the right viruses were looked for), it certainly could have been some sort of viral myocarditis. I would definitely meet with your OB/GYN and pediatric cardiologist, and discuss these issues further in depth to get them explained more, especially once you get the rest of the genetic testing back.
Bloodwork came back as no viruses also
Dr Boris thanks so much for your reply...her heart rate was only starting to be a concern around this mark...I did have weekly non stress tests...so you don't think the ehlers or marfan could have caused the heart issues? Could my gestational diabetes caused the heart issues or my age?? Scared at this point to even think about having another child in case this would happen again...thank you for your reply! Just so lost!!!
MEDICAL PROFESSIONAL
Dear Tonic,
I am so sorry that you, and she, went through all of this. There are so many reasons that this could have happened, and without all the information in front of me, it is difficult to say why this occurred. I can say that if her heart was severely enlarged, she could have had a persistent tachyarrhythmia (fast abnormal heart beat), such as supraventricular tachycardia (SVT), that could have put in into hydrops (congestive heart failure in the fetus). The GI findings could have easily occurred due to the poor cardiac output. The finger findings could certainly be associated with a connective tissue disorder, like Marfan syndrome, but it is not typically associated with SVT. It seems like a lot of the problems likely occurred much earlier than the 36 week ultrasound, based on the description, however.
I am so sorry that you, and she, went through all of this. There are so many reasons that this could have happened, and without all the information in front of me, it is difficult to say why this occurred. I can say that if her heart was severely enlarged, she could have had a persistent tachyarrhythmia (fast abnormal heart beat), such as supraventricular tachycardia (SVT), that could have put in into hydrops (congestive heart failure in the fetus). The GI findings could have easily occurred due to the poor cardiac output. The finger findings could certainly be associated with a connective tissue disorder, like Marfan syndrome, but it is not typically associated with SVT. It seems like a lot of the problems likely occurred much earlier than the 36 week ultrasound, based on the description, however.
Thought I might add we had to take her off ecmo because of brain bleeds from the machine...
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