Congenital heart defect question?

Question

My husband and I are expecting our first baby this spring. Because my husband was born with a congenital heart defect, our baby is being screened prenatally, to catch any potential problems. The perinatologist who is handling our case asked for specific details about my husband's condition. Since my husband was an infant during the worst of it, his mother was the person I spoke to for information, but her information is confusing me.

As far as I understand, my husband was born with an aortic stenosis as his official diagnosis. The way his mother explained it, he was born with some sort of hole in his aortic valve, and some time after he was born, his aortic valve became affected by plaque. It worsened, and he was scheduled to have the valve replaced, but when he was checked right before surgery, the plaque was gone.

All the reading I've done on congenital aortic stenosis mentions children born with a bicuspid valve, or with a more narrow aortic valve, but I've never read anything like what my mother-in-law described, and I'd imagine that if he did have some kind of hole in the aortic valve, it would have to be repaired right away, wouldn't it? My husband has no other defects to his heart, just the aortic valve, and his recent echocardiograms have come back normal.

Is there something I'm missing, or perhaps is my mother-in-law mistaken? Any insight would be appreciated. Thanks.

chafarm123 · Accepted Answer

Many Congratulations on the birth of your new son or daughter, and also, I would like to commend you on the excellent manner in which you are following up this potential issue.
    It is my opinion that your mother-in-law found herself in an abundantly stressful situation with a potentially life threatening issue with her beloved baby. When we have an infant with a serious medical issue, even those of us who are trained in this field, find it hard to absorb, accept and recall everything we were told about our child's condition.  It is most likely that she misunderstood the pediatric cardiologist's initial concerns, diagnosis, and comments concerning resolution.   It is possible that there was a resolution of a suspected problem, but I have never heard of such a thing in the location you mention.  (Occasionally a baby is born with a atrio-septal defect which heals itself while awaiting surgery etc.)
        I would like to make one suggestion though.  Even if your husband's issues are resolved, and even if all of your children in future have absolutely clean echocardiograms and clean EKGs as infants and young children, I would like you to consider having your pediatrician get an EKG at 11 or 12 before they enter puberty on any child you have.    In Spain and in Italy, a screening EKG looking for a syndrome called "Long QT syndrome" is already done,on pre-pubescent boys and girls, especially before they engage in sports, but we in the US have not made this a protocol.  Perhaps we in the US should also.
        Again, I want to commend the really fine way you and your husband are gathering information prior to parenting, and I have no doubt that once these issues are resolved that you will have a wonderful time parenting your new baby.
    Congratulations and very best wishes.

Anonymous · Answer

Clearly when you talk about congenital defects that would include not having any heart develop at all- definitley deadly. Health care has advanced so much that they can pick out defects on ultrasound well before the birth and get you to a centre that can treat the defect. Sometimes they even do a repair in utero. Some defects would be deadly if you had the baby at home or in a small town, but fixable in a big medical centre. Babies can also survive the surgeries and die of infection, or another complication. Sometimes kids need a series of surgeries as they grow too. Probably 98% of heart defects are treatable now, and that depends on early detection so your child can be born in a proper setting and treated immediately after birth.

Not Too Serious · Answer

First of all, congratulations on your upcoming birth.  As to your question, official diagnoses are often inadequate in their description.  Your mother in law may know better, from the sounds of it.  Repair of the aortic valve is important you're right, otherwise your husband's heart may be damaged from having to pump through a defective valve, even if echo results come back normal at first.  Eventually having a bad valve wears out the heart.  This whole story is just really confusing and I don't think you have all the information; you're better off getting a doctor's opinion.

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Congenital heart defect question?

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