Bris and AVSD/ AV Canal Defect

amother

Thu, Apr 30 2009, 8:52 am

Hello,

Our baby has been diagnosed in utero with a congenital heart defect called atrioventricular septal defect (avsd) sometimes referred to as AV canal defect. We also know our baby is a boy. Our baby will require open heart surgery when he is 4-6 months old. It has a very high success rate and we have a lot of emmunah that everything will go well, B"H.

I am concerned about whether we can do the bris at 8 days or if not how long we'll have to wait. We asked 2 separate doctors about it and got 2 very different answers. One said that if the heart defect is not more complicated than they think (some things can only be seen once the baby is born) then she does not think there should be a problem with doing the bris at 8 days or shortly after. The other doctor said he would not advise doing it until the baby has recovered from the heart surgery (which would not be until after 4-6 months!!!!!!!!!!!!) He made it sound like a big deal because he said the risk of infection can be very dangerous in our situation.

I'm not sure what to do. Obviously we have to wait for him to be born and see if he is stable and doing well, I"YH. But one doctor seems to think we shouldnt do it even if the baby is stable - not until after the heart is repaired...We will obviously be asking a sheila to our Rav, but I was under the impression that in poskening these things, Rabbeim usually follow doctor's recommendations...so what do they do when doctors recommendations are at odds with each other?!?!

Anyone else have a baby boy with AVSD? Did you do the bris at 8 days or shortly after? Was everything okay?

Thanks!

ChavieK

Thu, Apr 30 2009, 9:03 am

Bsha'a tova. I hope that when the baby is born all will agree to do the bris bzmano. Much is up to the mohel. My son was on oxygen, he did not have any other health problems. It was my frum pediatrician who spoke to the neo-natologists & the mohel. The mohel agreed to do the bris as long as the baby could be off the oxygen for the duration of the bris. I have a lot of hakaras hatov to my dr for taking control of this. I do not think that the mohel was wrong either because it was him doing the bris. Do you have some trusted frum dr that would be able to look at the situation & assess it for you should you need the help?

In the meantime enjoy the pregnancy. Daven that this all becomes a moot point.

shalhevet

Thu, Apr 30 2009, 9:05 am

OP, hugs.

AFAIK rabbonim are much stricter in waiting for a bris than doctors. I have heard of many cases when doctors allow it (jaundice often being a common example) and the rav/ mohel does not.

If it is bothering you I'm sure you could ask your rov a theoretical question just like you did to the doctors, with obviously the 'real' shaila once the baby is born.

I wish your baby a refua sheleima, and you an easy birth.

amother

Thu, Apr 30 2009, 9:09 am

My grandson was diagnosed with a kidney condition in utero. The urologist had said no bris, not a good idea. They had a frum ped too. He also said go ahead with the bris & so did the mohel. The mohel said he had done a lot of brissim with this condition, which requires surgery at about 2-4 months. Maybe talk to your mohel. See what he has done in the past. If he does a fair amount of brissim he may have more info.Try not to worry too much about this before it happens. IY"H you will not need all this info.

amother

Mon, May 04 2009, 6:47 am

My baby has recently been diagnosed with the condition. But he is older. We did not find out about the condition until he was over 6 months old. His only symptom was his low weight gain.
We had a bris on time as we did not know anything about his heart condition.
I will love to be in touch with you but I do not want to give out my screen name
Do you know if it is partial or complete AVSD?

downsyndrome

Mon, May 04 2009, 9:09 am

OP, you really need to see how the baby is doing once it's born.
My daughter was born with an ASD/VSD and at first we were so hopeful that the holes would close on their own, but they kept making trouble and she kept going into heart failure. At nine weeks old she had her heart repair (open heart surgery) and she became a new, healthy baby B'H. Today she is a six-year old beautiful, brilliant, thriving little girl B'H.

amother

Mon, May 04 2009, 2:51 pm

I have a daughter who was born with a more complex heart condition. asvsd was only part of the problem. She is a top kid today. There is an organization yemeitz libechu. Please call them for support. I wish to remain anonymous but I do have a lot of experience in this field. Let me know if you want me to message you

Also if you are in America I can help you with information about dr. and our experience.

amother

Wed, May 27 2009, 11:11 pm

amother wrote:

It's complete. Will your baby be having surgery soon? Refuah sheleima to him! I understand that the surgery has nearly 100% success rate and kids recover from it really well!
In a way, it is a big bracha that you found out after he was born. You didn't have to deal with the uncertainty of whether he would have down syndrome. As you probably know, this particular type of heart defect carries with it a 1:2 chance of down syndrome. We cannot get an amnio (as per our psak), so we wont know for sure until he is born. As if the heart defect is not enough to worry about, we also have to wonder if he'll have ds or not.

For everyone that has suggested we doven that the heart defect will go away and my birs question will become a "non-issue" - that's not really an option. This type of heart defect is not like other simpler heart defects that can correct themselves (ie: a simple vsd or asd which are small holes that can close up on their own). AVSD has to be corrected with surgery...Even though our son is not born yet, it is a firm diagnosis, it is not something that is "suspected" and needs to be confirmed at birth. With regards to the down syndrome, whether our son does have it or not is already decided by Hashem, our not knowing one way or antoher doesnt change whatever the reality is. Our rav has been adamant that we are not to doven that our son NOT have his heart condition or that he NOT have ds, but rather we should doven that he should be as healthy as possible, that all should work out for the best, and that Hashem should give us the koach to deal with any challenges.

Thanks to everyone for your encouragement! Gut yom tov!

downsyndrome

Wed, May 27 2009, 11:19 pm

I am laughing at myself that I forgot to point out the most important fact, as it relates to you, in the whole scenario that we experienced with my daughter.
She was born with another defect, called a TE Fistula, which was corrected on the third day after birth. It was major surgery. Only AFTER she recovered from this surgery, was the ASD/VSD discovered. The point is that she had major surgery (much more major than a bris) with an undiagnosed, but very much there, heart defect, and survived and recovered B'H, and then ever so gracefully walked into heart failure...

amother

Thu, May 28 2009, 1:57 am

I am the mother who we only found out later on about the condition. The Dr said should wait a couple years for the surgery till he is bigger and stronger. My son has intermediate AVSD so it is not so bad and that is probably why it was not diagnosed straight away. I am so thankful that I did not find out any earlier ( during pregnancy or right after birth) as I know that he is doing OK. Already I got myself sick from stress the week I found out. B"h I have since calmed down and decided that there is no point to worry. It makes it easier knowing that the surgery is in the distant future.
That must be very stressful not knowing if it is Down Syndrome or not. Could you take a test to find out.

Tue, Dec 15 2015, 12:15 pm

My son (who has down syndrome) had a complete AV Canal defect. He was in the Nicu for 10 days. The Rav/mohel said we could do the bris a week after he was discharged. The cardiologist was fine with that and actually said better now than in a couple of weeks because in the beginning the defect doesn't cause the baby stress it develops more as time goes on so we should hurry up and do the bris now.

You can PM me if you want more info regarding the surgery or anything else.

cbsp

Wed, Dec 16 2015, 11:37 am

I'm quoting this post. The organization is still a really good resource..

happyone wrote:

I second the advice about calling Yameitz Libechu. Their phone number is 718-501-7537. They can advise you regarding doctors, rabbanim and help you connect with other families. They offer support, information and have a lending library of books on this topic.

B'hatzlachah Hug