I'm 30 weeks pregnant with boy/girl twins and found out at 23 weeks that our little girl has dilated cardiomyopathy and her outcome is poor. The cardiologist we saw said he didn't think she would make it to delivery, but we go for checkups every two weeks and her condition has remained the same, not deteriorated so now they think she may make it to delivery. At present she weighs 2lbs, 2ozs and her brother is 3lbs 2ozs. I'm just wondering if you've had any experience with an infant born with this diagnosis and if so have you ever witnessed a positive outcome. We aren't giving up hope, but are very realistic about her future.
Any advice or information you can give us is very much appreciated.
First, I would like to say congratulations on your pregnancy and that I'm sorry that you are facing the frightening prospect of losing one twin before birth or having a serious illness after birth. it sounds as though your daughter-to-be has already done better than expected and I hope that will continue to be the case. There are medical as well as surgical treatments for dilated cardiolmyopathy that depend in part upon the cause (though often the cause is unknown) and also the severity of the problem. Medications such as diuretics (which act to increase urination to move out excess fluid), ionotropes (which stimulate the strength of the pumping action of the heart) and others may be helpful. cardiac assist devices may also be useful which basically take over the heart function for a period of time (while awaiting recovery or for transplant). Some children with dilated cardiomyopathy do recover, however the cardiologists you are seeing are best able to tell you what they estimate the likelihood of recovery is for your baby. Keep in mind that following how the function looks over time (and after birth) will be important for developing that estimate and that the analysis of her chances with various treatments may well change over time depending on her condition and response to treatments. You can ask your cardiologists specific questions but also keep in mind that they may not be able to give you very specific answers - but they can tell you the best estimate based on their experience and medical literature and the data that they have at any given time about your baby. For example, you might want to ask whether her stability over the last 7 weeks changes their assessment of her chances.
I hope that she continues to be stable and that the outcome is better than expected after delivery as well -
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