Congenital Heart Defect

Posted by Karen on April 30, 1999 at 11:47:38
I found out I was pregnant on 1/31/99. I had had a tubal ligation more than 4 years prior after the birth of my daughter, but I got pregant anyway.  I did not know I was pregnant until this date and although I had symptoms, because I had a tubal ligation, I did not connect my symptoms with pregancy.  I had an ultrasound done to make sure the pregnancy was not ectopic, which it wasn't. On my secong ultrasound, a heart beat could not be seen, however a vaginal ultrasound did show a heart beat. From the beginning, my HCG levels have been lower than normal- which was a cause of concern for myself and Dr.'s.  On a later ultrasound, a possible defect was noted by the radiologist and I was referred to a Perinatologist who felt the baby had a probable atrial septal defect( hole in the heart). Upon fetal echocardiography, the defect was definatley diagnosed. The baby is very small- although I am 21 weeks.  They say it is suffereing from IUG(intrauterine growth retardation)  and it appears that the defect is causing problems for the baby already as far as growth. Dr.'s have described it to me as  the baby appears sluggish. Stree tests and non stress tests show a decrease in heart rate upon movement or contractions which I know is not a good sign. I feell very little movement from the baby- except for at night, but even that is  not extensive.  My Dr. seems quite concerned and is quite knowledgeable, however I get the feeling that they are not telling me everything. It seems to me that when they tell me things, they are cushioning the information- perhaps not to get me upset. I have been under a tremendous amount of stress due to this.  At my most recent appointment, I was told that there was very little growth and that the amniotic fluid was lower than usual? What does this mean? There was also mentionof the possibility of the baby developing an infection which could in turn be spread to me. Obviously this has me concerned. I just dont understand what is going on. I dont understand how the baby got this defect- what are the causes? I know my Dr. told me drug and alcohol use are often causes, but I do not use drugs and as far as alcohol, I may have drank when I didnt know I was pregnant which has me feeling compeltely responsible. What are the chances that this is what caused the defect?  Could drug use in the father cause this defect? If an infection passed to me, how serious can that be. What are the chances of this baby being born? I know I was told if she is born, she will need surgery to close the defect.  These are all questions I have asked my Dr. obviously, but I wanted to get an unbiased opinion. I have foudn a lot of helpful and informative information on this site and I would appreciate any information you could give me. If anyone else readingthis has ever had a similar experience or knows of someone who has, I would greatly appreciate hearing from them as well.

Posted by hfhs.md.db on May 03, 1999 at 12:59:31
I'm sorry to hear of all that you have been through during this pregnancy.  It is always difficult to hear that there may be a potential problem with your developing baby.
Congenital heart defects (CHD's) occur in 0.5% of all pregnacies. There are many potential causes:
-sporadic or unknown: these make up the VAST majority of cases of CHD. The risk of recurrence is 3-5% in subsequent pregancies (for any CHD).
-genetic syndromes: account for some cases of CHD. By definition, associated with other physical findings in the child. Ultrasonographic evaluation will reveal many (but not all) associated birth defects that could be part of a genetic syndrome.
-infections are a very uncommon cause of CHD. The only well-documented infectious cause is due to rubella. Most women are not at risk due to prior immunization.
-chromosomal anomaly: CHD's are associated with abnormalities in chromosome number or structure. Able to be diagnosed prenatally with tests such as amniocentesis.
Drug or alcohol use are not well-documented causes of CHD. CHD in itself does not cause problems with fetal growth.
Please note that it is very difficult to predict how the baby will due after birth based on the results of prenatal ultrasounds. That is one of the reasons the information you are getting is confusing, simply because much is unknown until after birth. It is much easier to fully evaluate the infant after birth. If you haven't already done so, I would ask for consultation with a pediatric cardiologist, who would be the person evaluating and treating the child after birth
I hope this information helps. Good Luck.