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FORUMS > Congenital Heart Disease
Replying to Topic: TRICUSPID ATRESIA
Created On 11/5/04 12:55 PM by YEHIDI


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YEHIDI
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11/5/04 12:55 PM
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I HAVE A CHILD WITH THIS CONDITION (TRICUSPID ATRESEA) . I'D LIKE TO HERE FROM SOMEBODY WHO HAS A CHILD WITH THE SAME PROBLEM , OR HAS THIS PROBLEM THEMSELF.


Edited: 1/12/05 at 3:25 PM by FrumSupport Moderator
 
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GamZuLetovah
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11/5/04 1:04 PM
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Yehidi,

I'm sorry to hear that your son is suffering from a serious condition. My son was also born with a heart condition. He had a complete AV Canal which is a common condition for children with Down Syndrome. It was B"H corrected with surgery when he was about 3 months old. (He is 14 months old now Ka"h)

Can you please describe your child's condition in laymans terms?


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The sun is always shining! There are just times we don't see it.
 
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YEHIDI
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11/7/04 12:33 PM
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The childs heart was not developed completely , which is the right side , so what happend was that the blood was not circulating correctly , the first surgery was 10 days after the child was born , it is a BT SHUNT . The second surgery was at 7 months it is the GLEN SHUNT . B"h the child is doing great.
 
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downsyndrome
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11/7/04 11:34 PM
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Hi Yehidi! I'm Sarah. My 15-year-old son has Down syndrome, but B'H his heart was/is fine. It's our 20-month old daughter who was born with a TE fistula and 2 holes in her heart - ASD and VSD. Everything was repaired B'H and she is a darling child KA'H.
What is the difference between tricuspid atresia and hypoplastic left or right heart syndrome? I know that hypoplastic hearts are also underdeveloped and there is usually a chamber missing, resulting in the need to perform three surgeries. How does your baby's condition differ? Where do you live? Are you patients at Babies Hospital in New York?
Sarah
 
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YEHIDI
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11/8/04 10:36 AM
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Tricuspid atresea is actually the same as hypoplastic syndrom . We live in brooklyn , and use COLOMBIA PRESBITARIAN as our prime care .
 
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downsyndrome
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11/8/04 11:24 AM
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Is your child going to require the third surgery? How is your child doing generally? Last week Wednesday we had a full day of appts. at Columbia Babies Hospital with our baby and I was sitting right next to a young mother (non-Jewish) in the Heart Center, who was carrying an adorable, healthy 11-month old baby who was going in for surgery the next morning. It was also a hypoplastic heart and I don't recall whether this was going to be the second or third surgery for that baby, but the child certainly looked great!
Good luck with your baby!
Kol tov,
Sarah S.
 
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YEHIDI
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11/8/04 12:49 PM
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The 3 surgery comes by 2 1/2 years old , it is the FUNTAN SHUNT . But who knows , maybe with HASHEM's will , the child would not need it . By the way the child is doing great , the child is 14 months now k"h , and is having fis thearapy not extensively , because it is back logged from the other surgery's . But the child is crawlling already and is a real lechtige kid k"y .
 
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downsyndrome
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11/9/04 5:35 PM
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Hi Yehidi!
Does your baby have Down syndrome in addition its heart condition?
Sarah
 
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YEHIDI
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11/9/04 6:41 PM
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No b"h not . By the way , our cardiologist told us that children with heart conditions have to get a RSV SHOT every month in the winter , do you know anything about it?
 
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downsyndrome
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11/9/04 8:03 PM
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The RSV immunization is a 6-month series of vaccinations against the RSV virus. Yes, my baby did get the series of shots last winter. Did she do well? No. I have a feeling that the live virus that is usually part and parcel of vaccinations was affecting her adversely and she was coldish, croupy, and bronchitis'y for a big part of the winter. In fact, we visited the emergency room twice.
This season I only gave her the flu shot and that's that. I discussed it with her cardiologist when we visited him last Wednesday. He was surprised at my 'findings' and said that the RSV vaccine is only about 10 years old and that doctors don't have enough data on it to be able to determine whether my suspicions are justified. I wish you hatzlacha.
By the way, do you mind sharing with me the name of your cardiologist at Babies Hospital?
Sarah Sander
 
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YEHIDI
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11/10/04 10:58 AM
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The name of the cardiologist we are yosin is Dr Hsu . It is interesting what you write about the shot , because both , the cardiologist and the pediatrician are saying that we get the shot , but i guess it deprnds on the condition of the patient .
 
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downsyndrome
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11/11/04 11:03 AM
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We also received the recommendation by both the cardiologist and pediatrician. I don't condemn them for it; from their medical perspective, the advice was correct. I, personally, in retrospect, am having my doubts....I may be wrong...
Sarah S.
 
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UpsWithDown's
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11/22/04 10:55 AM
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Hi there,
My son is going in for surgery be'h tomorrow morning. He is going for the procedure called 'PA banding' which puts a band on his pulmumary artery to help regulate blood flow to his lungs. The reason is in order to protect his lungs , as his heart pumps very fast (and he breathes very fast) because of his AV canal defect. Please daven for him, and try to do a mitzvah for him - Shalom Nechemia ben Dubba. Thankyou!
About RSV- our cardio (Dr.Kleinman) at Babies hosp. had recommended this every month for i forgot how long. I would like to say that this shot is very important. I have heard 2 cases where their baby had gotten rsv and I have heard from them that it's a difficult thing. it's especially important for you because I believe you are waiting for his 2nd surgery? (shunt) they will not admit a baby for surgery that has rsv..and it's not the best thing to wait on sugery...baby's SAT's can come down, etc...
Hope this helps.
Hatzlacha and refuah shleimah.


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YEHIDI
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11/22/04 12:38 PM
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I will im'h daven for him , he should have a speedy recovery . By the way , my child has had the 2nd surgery already , and the child is doing great . You should know that the recovery goes faster than said, it is unbelievable how fast the recovery goes.
About the rsv shot , we have a shtickel with the insurance, but hopefully it will be fine.
And about Dr. Kleinman , he was the adending doctor at one time , and we had a problem with his billing , make sure before you go in to check exactly what is covered and what not .

HATZLACHA MERIBAH !

 
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GamZuLetovah
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11/22/04 2:34 PM
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He will be in our prayers. May Hashem send him a refuah shelaima!

Also, when my son had heart surgery about a year ago we relied on Chai Life Line for taking us back and forth to the hospital every day. They were amazing, they never let me down. Once there was a snow storm and their van wasn't doing trips and they couldn't find any volunteers, but sticking to their promise that they will provide a ride, they sent a car service for a round trip at their expense. Mi Kamchah Yisroel.


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The sun is always shining! There are just times we don't see it.
 
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YEHIDI
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11/22/04 3:13 PM
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Like us , we relied on "CHESED" rides back and forth , as "dubbi" wrote "HABOTEACH BASHEM "B'CHESED" YESOVEVEINEI" , we were surrounded by chesed .
 
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downsyndrome
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11/22/04 5:34 PM
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Once my baby overcame her medical hurdles and she was really home 'home' from the hospital, and things were falling into place, I sat down one day and wrote thank you notes with monetary donations to all the organizations that had been so very kind and helpful during our 3-month ordeal. We got meals from the Satmar Bikur Cholim and Chai LIfeline, transportation from Chesed, the Bikur Cholim Apartment in Washington Heights for Shabbos, HILF and Chai Lifeline volunteers to sleep over with the baby when she wasn't in ICU, etc. I think that when people are in such crises, we get a heightened level of hakoras hatov and we should act upon it.
Sarah S.
 
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UpsWithDown's
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12/8/04 2:51 PM
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Thank you all for your tefillos...B''h the surgery went well....a few hours after surgery Shalom Nechemia went into cardiac arrest for 10 minutes, then it happened again for 2 minutes a few hours later...it was some scare there, and I have never felt so dependent on HaShem as I did at those crucial moments....b'h miracle upon miracles he recovered well from both episodes, and his numbers were stable. We just came home Motzei Shabbos (almost 2 weeks after surgery...typical recovery from the procedure is 5- 7 day sor less..obviously it's min hashamayim that what happened happened...) But I agree., the chessed that was done with us throughout those days was unbelievable! It really helped heal us in many ways. Sarah, I like your suggestion about thanking e/o right away.
Do you remember those precious ladies and girls that came to visit almost every day to see how the baby was doing? I felt like hugging all of them. They ranged from ages 19-60 years old. :-). We are so fortunate to have been born into such a special nation. may all the chessed that is done protect klal yisroel from tzaaros., and I'm sure it is already.
Did things work out with your insurance and the shot? I know the shot costs $1,000....
did it work out for you? Hatzlacha and refuah shlemiah


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GamZuLetovah
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12/8/04 4:05 PM
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I am so happy to hear that everything turned out good B"H! You got my heart racing there for a few seconds.


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YEHIDI
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12/8/04 5:39 PM
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B"H EVERY THING WORKED OUT FINE . THE INSURANCE COMPANY HAD NO CHOICE BUT TO AUTHERIZE THE SHOT FOR US . THEY ARRANGED FOR THE VISITING NURSE SERVICE TO COME DOWN . OUR KID TOOK THE SHOT B"H WITH NOW PROBLEM .
 
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