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TOPIC TITLE: TRICUSPID ATRESIA
Created On 11/5/04 12:55 PM
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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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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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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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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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*Haboteach BaHaShem chessed yesovevenu*
 
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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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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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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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*Haboteach BaHaShem chessed yesovevenu*
 
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GamZuLetovah
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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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UpsWithDown's
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Hi all,
I am posting this for a friend who's child just had heart sugery ( I don't know what kind of surgery). Now, it's a few days later, and they tried to start feeding the baby, and he cannot keep anything down, and this has been happening for 5 days now. The doctors are very concerned...Does anyone know of anyone that this has happened to, and if there is a solution for this?
Any info would be appreciated.
Thanks!
His name for tehillim is Yechiel ben Yocheved.



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*Haboteach BaHaShem chessed yesovevenu*
 
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GamZuLetovah
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12/13/04 1:32 PM
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What do you mean by "cannot keep anything down"? Does this mean that he is throwing up or that he is just not eating as well as expected after the surgery?

After my son's surgery it took him 2 weeks to start eating normally again (but he did not throw up) and we were very concerned because others have told us, from their experience, that he should be eating normally after a week. But in the end he B"H started eating better. I'm not a doctor and every case is obviously different, but I'm just telling you our experience and I hope it sheds some light.


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The sun is always shining! There are just times we don't see it.

Edited: 12/14/04 at 2:21 PM by GamZuLetovah
 
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UpsWithDown's
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Thank you. B'h my friend tried nursing the baby, and he's been doing great since (didn't want the bottle i guess).
Yehudi, I have a friend that is 8 mos pregnant ke'h, (she lives in eretz yisroel) and her doctor just told her that he thinks her baby has tricuspid atresea. Would you call her up to give her info. She has a whole bunch of questions, and i'm sure you can be of tremendous help and chizuk for her...she found out like a week ago....
Please let me know if you can.
Thanks tons.
A freilichin one more day of chanukah to all.


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*Haboteach BaHaShem chessed yesovevenu*
 
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YEHIDI
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I would be more than happy to help another yid, so if you dont mind, please provide me your email address, and i will give you my info, or you can give me her info.
 
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UpsWithDown's
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Thanks Yehudi. You are such a kiddush HaShem. Please email me at dsimon@corp.idt.net so I can give her name and number etc.


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*Haboteach BaHaShem chessed yesovevenu*
 
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momofds
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My son with Down Syndrome and AV Canal defect of the heart had RSV when he was one years old. It is a horrible virus for young child to get! We almost lost him! I strongly recommend getting the Synogis (RSV) shot if it is available to you. It is a very expensive shot, but we still get it for him even though he is 3 years old, because we are so afraid of him chas v'shalom getting the virus again. Many people that have had children with RSV say that their children have asthma & long term lung damage from it.... Get the shot!
 
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bmr
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I just read all these old posts and the new one too.
I'll second that about getting the RSV shot for protection (Is it too late already for this season?)
Our 15 year old son with DS never got RSV shots as a young child - they didn't exist then. But in the 3-4 years post AV Canal repair we had numerous hospitalizations for pneumonia, several of them thanks to RSV. Somehow the RSV infections were always in Nov-Dec...I don't know if treatment has changed since then, but in those days it was 18 hours per day for 5 days under the Ribovirin tent in the hospital. It definitely wasn't fun, and there were plenty of concerns about side effects of the Ribovirin mist so we couldn't be with him for those hours.
I guess like all vaccinations, there's often a risk of some sort. But the chances of complications from the disease itself are for more probable...
Somewhere at about 5 years plus our son outgrew the constant respiratory issues, got off the nebulizer and dropped the "asthma" diagnosis. We haven't had trouble with RSV since, b"h, despite ongoing cardiac issues. We just stick with the flu shot these days.
Hatzlacha raba...
 
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YEHIDI
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The shot is available to us b"h, and our kid got the shot twice already with no side affects b"h.
 
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darlingdowny
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my 6-month old daughter had an av canal repair by Dr Q (best of the best) a couple of months ago and once again Dr Kleinman had recommended the rsv shot. She is certainly congested all the time and im convinced that it's from the shot because one month she went five weeks between shots instead of the usual four and in that one week she had cleared up a lot. However i do think that a minor nuissance of a stuffy nose is better than a major problem with the rsv.

(p.s.when my daughter was recovering there was another young couple who were getting a tour of the facilities in advance of their sons surgery the following week. i was just curious if anyone knows someone whose son had surgery by Dr Q. towards the end of November because i dont remember the mother's name and im curious to know how everything went for them.-obviously no names here.....)


Edited: 2/11/05 at 2:44 PM by darlingdowny
 
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ag
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Boruch Hashem, we don't know much about heart problems but I'd like to share with you our experience with RSV. Last week, my 15 month old, a normal healthy child, developed a runny nose and cough and slight fever. The doctor checked him last Tuesday and said it's just a cold. By Wednesday, he was very cranky and couldn't keep his head up so I had him checked again. This time, the doctor sent us for a chest x-ray and blood test which both came back normal. By Thursday, he was looking even worse, and though I'm not one to run to doctors, I was concerned enough to take him a third time. This time, after one glance at him, the doctor said to take him to the ER which we did. There they decided that it's just a virus (based on the tests from the previous day that I had brought along) and that in addition, he had a neurological problem and that's why he has such low muscle tone. I tried explaining that he usually doesn't have low muscle tone at all and that it's just due to the illness but they said that if he's 15 months old and doesn't walk yet, there's obviously a neurological issue involved which is unrelated to the virus. Their instruction: Take him home and he'll recover shortly from the virus and then take him to a neurologist. We left the hospital with a bad feeling (we knew there was no neurological problem; we were uncomfortable going home with a child in that condition). A few hours later, I went to check on him in his crib and he was not breathing, limp, and pale. I gave him oxygen (I have a ventilator dependent child so we have it in the house) and checked his saturation--it was 27. To make a long story short, he had to be intubated in the ambulance, was on a vent until the following morning, and then slowly weaned off the oxygen. The diagnosis: RSV. Boruch Hashem, he's home and suffered no damage from the event but I wouldn't recommend taking a chance with something like that. If you can, I say get the shot!
 
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SmileyRN
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I haven't read through all the posts here, but just to clear things up a little - Synagis (the RSV vaccine) is not meant to prevent RSV. Its actually only meant to minimize the complications of the disease.
Since the virus is so common in the wintertime now, many people are cathching it. However, healthy kids just shake it off without even realizing that they are affected by the virus.
Immunocompromised children are extremely susceptible to getting sick from the virus because adults and children with the common upper repiratory infections are carrying the virus around.
If you have a cold in the winter time, wask your hands often and try to minimize contact with hi risk children - preemies, congenital cardiac probs, respiratory issues...

About the Ribovarin - one warning to all is that is teratogenic, meaning very dangerous to anyone pregnant who's in the immediate environment of the nebulizer or mist tent.
 
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bmr
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Take a look at
rsvprotection.com
for a comprehensive explanation of rsv...
Is the season over yet??


Edited: 3/2/05 at 10:55 AM by bmr
 
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UpsWithDown's
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Hi Darling Downy,amush
I am that couple that was taking the tour in November. It helped us so much to see you with your adorable or should I say Darling Downy :-). ..I've been meaning to email you ,but I don't remember your email address.
I'd love to knowe how your baby is doing. Our baby end up having the PA Band Surgery on 11/23...and he's doing fantastic since then b'h. They are looking at him having the all-inclusive AV Canal repair some time this fall.
Hope to hear from you. You can email me at bhdtes36@yahoo.com.
Besuros Tovos.


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*Haboteach BaHaShem chessed yesovevenu*
 
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SW
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Hello! Sorry about The empty blank I'm a first time user.
My 7 month old daughter was born with Tetrology of fallot. It is a heart condition that consists of 4 different problems in the heart. She was scheduled for surgery but then she got RSV even though she had the shots. B"H it was a mild case, She was sick for six weeks but she did not have to be hospitalized. Her new date is Jan 3. Please daven Nechama Chana Malka bas Sarah. I would love to talk to someone (or chat) who has a child with Tetrology of Fallot that already had surgery. THank You.
 
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downsyndrome
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Hi SW:
You would be best off contacting an organization that deals with children who were born with congenital heart defects. Yameitz Libechu is such an organization. You can reach them at 718-486-2895 and/or 718-501-7537. Hatzlacha and a refuah shleimah.
Sarah S.
 
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sima
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1/4/06 11:18 PM
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hi -

just signed on and read your message...i hope things went well with your daughter. just wanted to let you know that my son who was also born with tetrology of fallot...was completely repaired and is doing wonderfully. it took a long time - but, thank G-d, he is healthy and active and 19 years old!

so if you have questions or want to "talk" further - let me know, i will be happy to share my experiences in more detail.
 
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mike21
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1/10/06 10:44 AM
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hi i am new to this board . my story is a littel diff. i am in my 30's i have singe ventecel and tricuspod atresia when i was growing up we didn't know any body with this problem you parents are very luck to have each other. i am married b'h.i did two funtan surgerys b'h if you met me you could'nt tell. today they have made a lot of proggress in the surggery good luck i'll be around.
 
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mimi
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Hi, I was sorry to read about your son. I'm 21 and was born with tetrallogy of fallot. 21 years ago they didn't operate until age four. I had a shunt until they were able to do the open heart surgery. I was operated on at Columbia hospital as well . I have only good recollections. I loved chocolate leben at that time. During my stay in the hospital they served that for breakfast, and guess what, I felt great. The ironic thing is that it's that more traumatic for the parents than for the child. With children at the age, u could almost make it sound exciting. The only time I remember being in great discomfort was when I had to go for shots, and after the surgery when I was hooked up to a respirator. Not to bad, right?
Bottom line: Don't make your child feel like a nebech and he won't. I just gave birth to my first child, and I was kind of nervous about it being genetic, but B''H, he was born ok. I wish you lots of Hatzlocha. Mimi
 
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mimi
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Hi SW,

I'm worried about your daughter, was the surgery succesful? I'm a 21 year old mother, with tetrollogy of fallot. B''H, so far so good. If you have any questions, worries? ask, I'm listening.
 
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SW
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Thanks for all the well wishes. My daughters surgery was a succees b"h. They could not do exactly what they wanted to because she has only one coronary artery (most people have 2), which was going directly across the place of the surgery. Dr. Q. was happy with the results, but he said that we have to keep a close eye to see if her pulmonary valve grows in porprtion to the rest of her heart. So we still need the tehillim Nechama Chana Malka bas Sarah. How long do we need to keep on getting the rsv shots? Is it onlyfor the first year, or do you have to continue for a few years?
 
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froggy4
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my baby has hypoplastic left heart syndrome, im not sure how similar it is to ur baby's codition ..i was told that the rsv shots are given for the first 2 yrs maybe longer..doctor Q did my daughters surgeries also ( shes 16 months old now)


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SW
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Thank you for your replies. Mimi, I would like to know if you had any restrictions while you were growing up? Also, Did your mother have to tell every teacher of yours that you had a heart condition? Do you have earrings? My daughter's cardiologist said that she has to take medicine before, and I was wondering if it's worth it. Do yopu still have narrowing, or were they able to openthe valve/artery wide enough. Thank you for sharing.
 
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rochel leah
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hi, my name is rochel leah. i am five months preg. and our baby was diagnosed with hlhs
we are very optimistic. especially after reading all your comments. we are having a problem
with our insurance but we have already been to see dr. kleinman.
 
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GamZuLetovah
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7/19/06 12:32 AM
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Hi,

Your baby might be eligible for straight medicaid due to his/her condition and medicaid will be accepted by Columbia. My son had surgery there using straight medicaid. What insurance do you have?


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rochel leah
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7/19/06 4:14 PM
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gamzuletova,
we have amerigroup with nj familycare an hmo affiliated with medicaid. the pro
blem was they claimed that newark beth israel did the norwood procedure and therefore they wouldnt cover it in another hospital.
b"h we just got a phone call a couple of hours ago that the head of pediatric cardiothoracic surgery
in nbi was not doing that entire procedure at this time and therefore she told the insurance
company that they should go ahead and cover us in columbia resb. which they just confirmed that they are willing to do that for us at this time.
 
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GamZuLetovah
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7/20/06 1:11 AM
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We had the same problem. My son needed open heart surgery to fix a complete AV Canal and we wanted it done by Dr. Q. in columbia. Our insurance (Americhoice - a medicaid HMO) claimed that it can be done in LIJ hospital which is in network and did not want to allow us to go to Columbia. After a two week fight with Americhoice, which got us nowhere, we were able to switch to straight Medicaid (which my son was eligible for due to his condition) with the help of an orginization call Nachas Healthnet. His surgery and hospital stay was fully covered by Medicaid. You can only switch to medicaid at a certain time of the month, but with the help of the above-mentioned organization we were able to do it overnight and get him into the hospital asap. If you need the phone number of this organization I will be glad to look it up for you. Please feel free to ask if you have any more questions.


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rochel leah
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7/20/06 9:39 PM
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thank you gamzuletova
the insurance company amerigroup also hmo with medicaid has agreed to cover b"h
s
o far so good
the coordinator at columbia is putting together all our appointments with maternal and fetal medicine and the surgical and post op team!! thank god for small miracles.
have a good shabbos and thanks for talking
 
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Jewish Mother
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2/16/07 1:27 PM
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If you are intrested in getting in touch with other parents who have kids with the same defect call 718-486-2895.
 
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Lev16
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5/18/07 5:12 AM
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My daughter doesn't have tricuspid atresia. But, was born with a condition that affects the tricuspid valve known as Ebstein's anomaly. She has mod-sev tricuspid valve leakage, pulmonary stenosis, and an ASD. She is B"H doing very well. They don't perform surgery for her condition unless she has symptons. Has anyone heard of someone with any of these conditions ? What was done?
 
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rochel leah
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5/28/07 5:05 PM
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Hi just an update. Our baby was born. A little girl. Her name was Nessa but we got a bracha and a mess. from r' chaim kenyievsky in e'y and we added. Her name is CHAVA NESSA.she had two surgeries so far norwood/sano at two days and glennat 31/2 mths.early but b"h shes amazing k"h. We met a couple from nj whose baby has ebsteins. they havent done anything so far. the baby was in the hospital for endocarditis(infection around the heart) for 6 weeks. they see dr.hsu at babies.

We started an organization called HeartBabies Inc.we ahve a website www.heartbabies.com We have a program where frum people go to long term care facilities and/or hospitals where compromised babies/young children are and give them a yiddishe atmosphere.If you know anyone who wants this for their child or any one interested in helping us perform this chesed e-mail me at rachelitz@heartbabies.com. Also if you know anyone ,sometimes chai lifeline only leaves from certain areas to the hospital. I know when we were in the hospital and neede a ride they only left from monsey or lakewood or brooklyn and we werent near any of those. So we offer to arrange rides for people who fall outside of those categories only.

check us out

if there are other suggestion people have for programs let me know.
 
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