Pediatric Heart Expert Forum
CHD
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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CHD

Dear Doctor,

Our family has been blessed with a Baby Boy couple of months ago.  My Wife undergone Ceasarian to deliver him. We were so happy with his addition to our family.  We have been assured by the doctors that we have been blessed with the Healthy Baby Boy with good height and other physical charecters. Everything was fine till 4th day.  On the 4th day after his birth, Child Specialist while informed us that there are some heart murmurs on checking the Heart Beat.  As the boy is healthy and not turned blue in colour she told its fine for now and asked us to see her agiain after a week to recheck the heart beat again.  When we went and checked the heart beat, she could still observe the murmurs and suggested 2d echo and chest x ray.  When we took them the the head of CHD detected tricuspid atresia and informed us the baby has to undergo three major operation for his survival. The first should be PA Banding within 2 months to enable other 2 other operation one at the age of 1 year and another at the age of 3-4 years and asked us to prepare mentally and financially for the operations. And he assured the boy would certainly  be fine after that but cant be a sports person he said. The boy was very healthy and active till 2d echo.  While we are on the way to home we lost our son in middle. Finally we lost him before we reach home.  What could be the reason for his sudden death.  It was his 16th day. . He did'nt even had suffered with fever or cold etc till that time.  We took 3 gynics opinion at his fatal stage.  All the 3 Gynics assued that the fatus is very healthy and does'nt have any ills. Inspite of lot of care at pregnancy stage and after birth we lost our child. Kindly let me know what is the actual problem for his sudden demise inspite of time slot given by CHD Chief for 1st operation is 2 months. And advise us for the future prospects aswell to bless us with a healthy baby.
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Dear Cherry,

I am very sorry that you had to go through this.  Your son had a congenital heart defect called tricuspid atresia, in which the tricuspid valve (the valve between the right atrium and the right ventricle) does not form.  This means that there is only one true functioning ventricle in the heart, not the normal two.  This is not a common defect, but certainly does need either a series of surgeries or a heart transplant to be able to survive to adulthood.  These babies are also at risk for other problems with the heart, including arrhythmias, formation of blood clots that can cause a stroke or other problem, and infections.  Without knowing the exact information about your son’s anatomy, I cannot tell you why he died suddenly.  I can tell you, however, that the incidence of congenital heart disease in the general population is approximately 1%.  Once you have had a child with a congenital heart defect, the risk goes up to about 2-5%, which means that the likelihood of having another child with a heart defect is low.  Once you have gone through the grieving process and feel that you are ready to have another child, you should certainly consider having a fetal echocardiogram performed during the second trimester.  This is an ultrasound of the baby’s heart that can tell you if the baby’s heart is normal, or not.  This is a much more complete evaluation of the heart than a typical ultrasound study, which can allow you to better prepare yourself for what will hopefully be a better outcome.
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