Comments for Ebsteins Anomaly http://www.ebsteins.org together we'll be better Sat, 28 Aug 2010 03:29:17 +0000 hourly 1 http://wordpress.org/?v=3.0.1 Comment on Is EA genetic? Can it be passed on to children? by linda http://www.ebsteins.org/?p=976&cpage=1#comment-1288 linda Sat, 28 Aug 2010 03:29:17 +0000 http://www.ebsteins.org/?p=976#comment-1288 I believe EA is heredity. I have a 2 1/2 yr old that has EA which is moderate to extreme. I would have another daughter that was a stillborn. She would be 8 years old. She was born with fluid on her heart that was called "Hydrop". The daddy of both of them has another son with a heart murmur. I don't get it. They tell you nothing. I believe EA is heredity. I have a 2 1/2 yr old that has EA which is moderate to extreme. I would have another daughter that was a stillborn. She would be 8 years old. She was born with fluid on her heart that was called “Hydrop”. The daddy of both of them has another son with a heart murmur. I don’t get it. They tell you nothing.

]]> Comment on newly diagnosed by Gabriela Clemons http://www.ebsteins.org/?p=302&cpage=1#comment-1285 Gabriela Clemons Thu, 26 Aug 2010 22:42:07 +0000 http://test.ebsteins.org/?p=302#comment-1285 My sister's unborn baby was diagnosed (about an hour ago) with this defect. She is 37 weeks pregnant and we just found out. The doctors say is severe and the babay will need surgery. I am devastated, we all are. I can't stop crying and thinking about what kind of life he will have if he survives at all. It feels like our whole world is crashing down on us. I have read the other comments and it makes me feel better that all the babys have made it. Thank you for this website My sister’s unborn baby was diagnosed (about an hour ago) with this defect. She is 37 weeks pregnant and we just found out. The doctors say is severe and the babay will need surgery. I am devastated, we all are. I can’t stop crying and thinking about what kind of life he will have if he survives at all. It feels like our whole world is crashing down on us. I have read the other comments and it makes me feel better that all the babys have made it. Thank you for this website

]]> Comment on Going blue by jennifer http://www.ebsteins.org/?p=957&cpage=1#comment-1284 jennifer Wed, 18 Aug 2010 19:47:48 +0000 http://www.ebsteins.org/?p=957#comment-1284 My daughter, Beth was diagnosed within the first few hours of life with a murmur which was then determined the next day to be EA of a moderate level. She is 11 1/2 now and although she continues to have moments of blue tinges around her lips, fingers, toes and gets cold very easily, one would never know she has a heart defect. We go to Johns Hopkins yearly to meet with the Ped. Cardiologist who is closely monitoring her. Beth is now smack dab in puberty which I understand to be the next hurdle to jump through as with the hormonal changes to her body, her heart could be affected. We have been blessed but like any parent with a quiet health situation, it is never far from my mind. It has become more difficult in monitoring her as she is spending longer periods of time with friends and going further away from home. However hopefully our explanations of how she should feel and may feel will help her if an emergency comes up. I am just glad to know that other parents out there feel some of this fear as well. It can be unnerving. I guess we are in it together! Blessings- Jennifer My daughter, Beth was diagnosed within the first few hours of life with a murmur which was then determined the next day to be EA of a moderate level. She is 11 1/2 now and although she continues to have moments of blue tinges around her lips, fingers, toes and gets cold very easily, one would never know she has a heart defect. We go to Johns Hopkins yearly to meet with the Ped. Cardiologist who is closely monitoring her. Beth is now smack dab in puberty which I understand to be the next hurdle to jump through as with the hormonal changes to her body, her heart could be affected. We have been blessed but like any parent with a quiet health situation, it is never far from my mind. It has become more difficult in monitoring her as she is spending longer periods of time with friends and going further away from home. However hopefully our explanations of how she should feel and may feel will help her if an emergency comes up. I am just glad to know that other parents out there feel some of this fear as well. It can be unnerving. I guess we are in it together!

Blessings-
Jennifer

]]> Comment on New to site by youngmom http://www.ebsteins.org/?p=985&cpage=1#comment-1281 youngmom Wed, 11 Aug 2010 20:06:42 +0000 http://www.ebsteins.org/?p=985#comment-1281 Hi Miranda, My name is Rebecca I am 22yrs old I was diagnosed with EA at 18yrs, that was when I started getting the symptoms.Especially the SVT causing syncope's , shortness of breath etc.... I had two perfect labors with no complications. They are both healthy but still closly monitored. I havn't had any type of surgery done for my EA, just a bunch of tests. I was told by the my cardiologist that I didn't need any surgery now. But that I should in the future.How did your valve replacement work for you? Is it worth it? Hi Miranda,
My name is Rebecca I am 22yrs old I was diagnosed with EA at 18yrs, that was when I started getting the symptoms.Especially the SVT causing syncope’s , shortness of breath etc…. I had two perfect labors with no complications. They are both healthy but still closly monitored. I havn’t had any type of surgery done for my EA, just a bunch of tests. I was told by the my cardiologist that I didn’t need any surgery now. But that I should in the future.How did your valve replacement work for you? Is it worth it?

]]> Comment on ‘mums’ and potential mums by sophie http://www.ebsteins.org/?p=353&cpage=1#comment-1279 sophie Wed, 28 Jul 2010 18:28:36 +0000 http://test.ebsteins.org/?p=353#comment-1279 Im a 25yr old, just had a baby...diagnosed with severe Ebstein's while i was pregnant. They did'nt think her chances of survival were good, advised me to terminate but carried on with the pregnancy. She has had open heart surgery with a bt shunt put in, now is 2month's old waiting for her next op in a few month's time,doc's say still serious but she is fighting everyday!! Im a 25yr old, just had a baby…diagnosed with severe Ebstein’s while i was pregnant. They did’nt think her chances of survival were good, advised me to terminate but carried on with the pregnancy.
She has had open heart surgery with a bt shunt put in, now is 2month’s old waiting for her next op in a few month’s time,doc’s say still serious but she is fighting everyday!!

]]> Comment on Is EA genetic? Can it be passed on to children? by Paula C http://www.ebsteins.org/?p=976&cpage=1#comment-1278 Paula C Wed, 28 Jul 2010 02:31:52 +0000 http://www.ebsteins.org/?p=976#comment-1278 Very good friends of ours have two children w/ EA, one mild, one had open heart surgery before one year old, and an aunt w/ mild EA. So yes, it can be genetic and run in families. This was not known at the time the first child had surgery. After surgery they parents opted to have the two older children have echo's... sure enough their oldest child had mild EA. So then the parents and all aunts and uncles were tested and it was the sister of the children's father who had mild EA. So yes, very very rare, but it can be genetic/run in families. Very good friends of ours have two children w/ EA, one mild, one had open heart surgery before one year old, and an aunt w/ mild EA. So yes, it can be genetic and run in families.

This was not known at the time the first child had surgery. After surgery they parents opted to have the two older children have echo’s… sure enough their oldest child had mild EA. So then the parents and all aunts and uncles were tested and it was the sister of the children’s father who had mild EA. So yes, very very rare, but it can be genetic/run in families.

]]> Comment on Cone Procedure by Paula C http://www.ebsteins.org/?p=1194&cpage=1#comment-1277 Paula C Wed, 28 Jul 2010 02:27:12 +0000 http://www.ebsteins.org/?p=1194#comment-1277 Alison, I am so sorry I have only just seen this post of yours some six moths later. Our son had the cone surgery w/ Dr. Del Nido in Boston in June of 2007. Our son Will, now 6.9 years old, was 3 1/2 at the time of the surgery. We live about 25 miles north of Boston and have been patients there since I was 19 weeks pregnant w/ our little guy. Dr Del Nido was GREAT, the surgery sent very well for our son and the cone has been exactly what I wanted for his severe Ebstein's. If your daughter Katie hasn't already had the surgery or you have any questions, please do not hesitat to contact me via our son's Carepage (www.carepages.com our son's page name is willparker2003 It is a sign in site and they will send me an email that you have requested to read his page and as soon as I get that I will approve and we can communicate any questions or things you want to know. Our son just graduated from Kindergarten this spring and had a great year. He played soccer, basketball and will finish his baseball season next week. He keeps up well enough and if you were not told, you would never know right now he had a heart condition. We were very very pleased w/ Children's Hosptial in Boston, as always, and the surgeon and our cardiologist Dr. Gerry Marx. I hope Katie is doing well and you have found some answers already. Warmly, Paula/ Will's mom Just north of Boston, Massachusetts, USA Alison, I am so sorry I have only just seen this post of yours some six moths later. Our son had the cone surgery w/ Dr. Del Nido in Boston in June of 2007. Our son Will, now 6.9 years old, was 3 1/2 at the time of the surgery. We live about 25 miles north of Boston and have been patients there since I was 19 weeks pregnant w/ our little guy. Dr Del Nido was GREAT, the surgery sent very well for our son and the cone has been exactly what I wanted for his severe Ebstein’s.

If your daughter Katie hasn’t already had the surgery or you have any questions, please do not hesitat to contact me via our son’s Carepage (www.carepages.com our son’s page name is willparker2003 It is a sign in site and they will send me an email that you have requested to read his page and as soon as I get that I will approve and we can communicate any questions or things you want to know.

Our son just graduated from Kindergarten this spring and had a great year. He played soccer, basketball and will finish his baseball season next week. He keeps up well enough and if you were not told, you would never know right now he had a heart condition. We were very very pleased w/ Children’s Hosptial in Boston, as always, and the surgeon and our cardiologist Dr. Gerry Marx. I hope Katie is doing well and you have found some answers already.

Warmly,
Paula/ Will’s mom
Just north of Boston, Massachusetts, USA

]]> Comment on unborn babies by caroline http://www.ebsteins.org/?p=361&cpage=1#comment-1276 caroline Tue, 27 Jul 2010 21:13:20 +0000 http://test.ebsteins.org/?p=361#comment-1276 I was very touched by this, as we set this site up to provide such help. Please let us know how your daughter goes along and thanks so much for posting. Caroline I was very touched by this, as we set this site up to provide such help.
Please let us know how your daughter goes along and thanks so much for posting.

Caroline

]]> Comment on Loss of our son, and looking ahead by Rebecca Cartwright http://www.ebsteins.org/?p=1123&cpage=1#comment-1275 Rebecca Cartwright Tue, 27 Jul 2010 20:08:29 +0000 http://www.ebsteins.org/?p=1123#comment-1275 Hi Jennifer, My daughter Harriet was born in 2007 and was transfered to Alder Hey they day she was born with extreem EA we were told there was nothing they could do for her as she was too sick, however she kept fighting and was offered an operation that could help in the short term as she would require 3 other operations later on, she was like any other baby in all other ways even on her weight/growth chart, she later developed an enlarged left ventricle and cardiomyopathy so was unable to have any other operations she was offered a heart transplant but unfortuantly died 5 days afeter going on the list, all this time I was pregnant with my son who as soon as I fell pregnant I was offered care at Liverpool Womens with a full cardiac scan by pediatric cardiologists pre and post birth he is completely fine and as it turned out a complete distraction as he arrived just 6 days after my beautiful Harriet passed away, my family has had genetic tests at the Countess of Chester and we were told that we had 2% risk of another child with ea and that our childrens children did also but considering they said any couples risk of a child with ea is 1% its not that great thanks becki Hi Jennifer,

My daughter Harriet was born in 2007 and was transfered to Alder Hey they day she was born with extreem EA we were told there was nothing they could do for her as she was too sick, however she kept fighting and was offered an operation that could help in the short term as she would require 3 other operations later on, she was like any other baby in all other ways even on her weight/growth chart, she later developed an enlarged left ventricle and cardiomyopathy so was unable to have any other operations she was offered a heart transplant but unfortuantly died 5 days afeter going on the list, all this time I was pregnant with my son who as soon as I fell pregnant I was offered care at Liverpool Womens with a full cardiac scan by pediatric cardiologists pre and post birth he is completely fine and as it turned out a complete distraction as he arrived just 6 days after my beautiful Harriet passed away, my family has had genetic tests at the Countess of Chester and we were told that we had 2% risk of another child with ea and that our childrens children did also but considering they said any couples risk of a child with ea is 1% its not that great
thanks
becki

]]> Comment on unborn babies by Stephanie http://www.ebsteins.org/?p=361&cpage=1#comment-1274 Stephanie Tue, 27 Jul 2010 04:15:45 +0000 http://test.ebsteins.org/?p=361#comment-1274 I feel compelled to share my daughter's story finally. My daughter was diagnosed with Ebstein's at my 21 week ultrasound. To say the news was devastating doesn't even describe it. We were told to go ahead and research the condition on the internet. Many of the articles found on the internet gave little hope to change our devastation. Then, I stumbled upon this site and this board. I was reading stories of children who were living with this condition. It gave me that hope that I needed. I was followed very closely prenatally. At 38 weeks, they saw fluid by her lung and induced me that day. To my surprise they allowed her to be born vaginally. Throughout my pregnancy they diagnosed her condition as moderate. They saw moderate regurgitation of the tricuspid valve and moderate regurgitation of the pulmonary valve. They were very careful to tell us that they could not plan their course of action until arrival. It could be mild enough that it is managable with medication or it could need surgery. She was in much worse shape upon arrival than they expected. Her heart was taking up almost her entire chest. It was already planned that she would be transported to Nationwide Children's Hospital in Columbus upon arrival. So, nothing changed. They wanted her to grow before her first surgery. They tried to wait until she was 4-6 months old. However, at 6 days old she went into her first surgery. She had a very rough recovery. BUT, I am happy to report that she is now 5 months old and doing wonderful. We are working on getting her to grow grow grow before her next surgery in a few months. Her tricuspid valve was in such rough shape that it was beyond repair. So, they are actually treating her case as if she had Hypoplastic Left Heart Syndrome. I have read in some of the posts about the statistics you were given... I am so glad that we were never told her chances. Everyday spent by her bedside I just tried to remain positive and I talked to her a lot. They just kept telling me that it was a slow road. Believe me, slow is worth every ounce of time. I just never let myself believe she wasn't going to make it. I think if they had told me her chances, they would not have been pretty. She was a very sick baby. As Eva said, "NO case is hopeless!" We were told that if you look up resilient in the dictionary you would find a picture of our little girl. Let me say that while it was devastating to find out about her condition prenatally... It is the reason we have her here today. They knew exactly how to care for her. We were blessed to live in a city with one of the best children's heart hospitals in the country. I think being in a place with such experienced people also helped. Please take from our story the hope that I found in reading this board that terrible October day. I feel compelled to share my daughter’s story finally. My daughter was diagnosed with Ebstein’s at my 21 week ultrasound. To say the news was devastating doesn’t even describe it. We were told to go ahead and research the condition on the internet. Many of the articles found on the internet gave little hope to change our devastation. Then, I stumbled upon this site and this board. I was reading stories of children who were living with this condition. It gave me that hope that I needed.
I was followed very closely prenatally. At 38 weeks, they saw fluid by her lung and induced me that day. To my surprise they allowed her to be born vaginally. Throughout my pregnancy they diagnosed her condition as moderate. They saw moderate regurgitation of the tricuspid valve and moderate regurgitation of the pulmonary valve. They were very careful to tell us that they could not plan their course of action until arrival. It could be mild enough that it is managable with medication or it could need surgery.
She was in much worse shape upon arrival than they expected. Her heart was taking up almost her entire chest. It was already planned that she would be transported to Nationwide Children’s Hospital in Columbus upon arrival. So, nothing changed. They wanted her to grow before her first surgery. They tried to wait until she was 4-6 months old. However, at 6 days old she went into her first surgery. She had a very rough recovery. BUT, I am happy to report that she is now 5 months old and doing wonderful. We are working on getting her to grow grow grow before her next surgery in a few months. Her tricuspid valve was in such rough shape that it was beyond repair. So, they are actually treating her case as if she had Hypoplastic Left Heart Syndrome.
I have read in some of the posts about the statistics you were given… I am so glad that we were never told her chances. Everyday spent by her bedside I just tried to remain positive and I talked to her a lot. They just kept telling me that it was a slow road. Believe me, slow is worth every ounce of time. I just never let myself believe she wasn’t going to make it. I think if they had told me her chances, they would not have been pretty. She was a very sick baby. As Eva said, “NO case is hopeless!” We were told that if you look up resilient in the dictionary you would find a picture of our little girl.
Let me say that while it was devastating to find out about her condition prenatally… It is the reason we have her here today. They knew exactly how to care for her. We were blessed to live in a city with one of the best children’s heart hospitals in the country. I think being in a place with such experienced people also helped. Please take from our story the hope that I found in reading this board that terrible October day.

]]>