MY SON JARED WAS DIAGNOSED THE SECOND DAY AFTER BIRTH ON 01-09-00 WITH HLHS. JARED WAS SENT BY HELICOPTER TO THE MEDICAL UNIVERSITY OF SOUTH CAROLINA. JARED HAD HIS NORWOOD AT 2 WEEKS OLD, HIS HEART STOPPED BEATING AT THE BEGINNING OF SURGERY AND THINGS HAD TO GO A LITTLE FASTER; AS A RESULT, HIS DIAPHRAGM WAS INJURED. JARED HAD SURGERY TO TACK DOWN THE DIAPHRAGM AT 2 MONTHS OLD. JARED HAS A PARALYZED DIAPHRAGM. AFTER LEARNING TO DRINK A LITTLE BIT OF HIS BOTTLE AT ALMOST 3 (THREE) MONTHS OLD, WE COULD TAKE JARED HOME. JARED HAD HIS SECOND SURGERY AT 6 MONTHS OLD, IT WAS ALOT BETTER THAN THE FIRST. HE WAS ONLY IN THE HOSPITAL 1 WEEK. JARED IS DOING VERY WELL, YOU WOULDN'T KNOW HOW SPECIAL HIS HEART WAS JUST BY LOOKING AT HIM. HE WILL HAVE HIS NEXT SURGERY AROUND 2 OR 3 YEARS OLD. IF YOU JUST FOUND OUT YOUR BABY HAS HLHS OR IF YOU HAVE AN OLDER CHILD WITH HLHS I WOULD LOVE TO HEAR FROM YOU.

my granddaughter has Dextrocardia,atrial situs inversus, comlete AV canal/DORV severe commom AV valve incompetence, S/Pcommom AV valve replacement S/P artery banding Surgical heart block with perment AV pacemakershe is now 20 months old is doing great has one more surgery to go

my granddaughter has Dextrocardia,atrial situs inversus, comlete AV canal/DORV severe commom AV valve incompetence, S/Pcommom AV valve replacement S/P artery banding Surgical heart block with perment AV pacemaker

Hi, my son had a Tetrallogy of Fallot repair done at 13 months. He is now 10 years old next week. Two years ago I learned that he will likely need his pulmonary valve replaced. So far he is doing well. I would like to find him some e-mail friends around his age for support and friendship. Also, any parents who wish to e-mail would be appreciated. I am a single parent and at times it is very worrying. Thank you for this site!!

Hi, my son had a Tetrallogy of Fallot repair done at 13 months. He is now 10 years old next week. Two years ago I learned that he will likely need his pulmonary valve replaced. So far he is doing well. I would like to find him some e-mail friends around his age for support and friendship. Also, any parents who wish to e-mail would be appreciated. I am a single parent and at times it is very worrying. Thank you for this site!!

My son was born Sept.18,1993. When he was less than twelve hours hours old he was diagnosed with Hypo-plastic Left Heart Syndrome. He had to be taken and flew in a helicopter to Peoria. He has had four open-heart surgeries. He is now 7 1/2 years old and is doing very well. He does eveything as anyone else. He is only developmently delayed in education and speech. I am so proud of him.

My son Noah Robert was born July 14, 200o he was diagnosed with Pulmonary stenosis. He had a balloon dilatation done at UCSF on August 4, 2000 he was 3 weeks. He is now 6 months and on Febuary 5, 2001 he will have to go back at which time the surgeions will decided to ballon him again or preform surgery. I am looking for people who have children or are a person affected with this form of disease

I just found out that my 13yr old son has and enlarged heart. His aorta is to small and his left and right ventricles are two large.

On July 11, 2000 we had our son Daan. The doctors found a heart-anomaly (a small right ventricle with valves on a other place than normal). Untill now I had the feeling standing allone. After reading all this I am feeling better. The doctor told uw that our son can live a normal live with his cardiac defect. We hope so. I would like to have contact with parents of patients who have the same heart problems, please contact us.

My son Quelynn was born with Aortic Stenosis with a Hypoplasic Left Heart. He had his 1st surgery @ 2 weeks old at Kosairs Childrens Hopital in Kentucky. He is now 12 years last year he had his 2nd surgery to replace his Aortic Valves and was doing good until his heart cath on 9 Jan 01. His AV's are leaking, has severe mitral valve regurgatation and severe Cardiomyopathy. His hopes and spirits are still high. God has blessed us. Would like to talk with other families that there child has AS as in 12 years I have only met one other family with a child with AS.

My nine year old son had open heart surgery ten months ago for partial A.V.S.D He has recovered very well.He also has Renal,Bladder problems.

What a wonderful site this is.I frequently go to sites such as this to keep myself informed on all the advances that have been made just over the last ten years.To see some of the wonderful success stories are wonderful for my heart.I had a daughter,Natalie suzzanne who was born on august the 27th 1990.The ped.dr thought there may have been something wrong and called in a cardiologist to have a look at her.3 hours later we were sent home with our 4th daughter and were about to prepare raising her untill that 5th dreaded day when something went terribly wrong with her and she quit breathing.We rushed her in and she was in the nicu for about 3 hours before she died.We found out later that she was diagnosed with hypo plastic left chamber.It was quite devastating for us at the time and we were afraid to have anymore children after her death.Thank god for miracles ,even though we did not want anymore children,god gave us a son(our only son)and what a blessing he has been,I guess i just want everyone to know that god never closes one door without opening another,so those of you enduring so much please know there is always hope.Again thanks for a site that has the ability to help people connect with others going through the same thing and giving them a means to further knowledge of what they are going through.And again to those who have gone through so much with success,i wish you continued good luck,and to those still enduring my prayer are with you...Always Tamra Burris

Iam a mother to a little girl named Danielle. She was born with Hypoplastic Left Heart syndrome.Iam just looking for poeple to talk to and understand what Iam going though.

My name is Nicole and I am 31 years old. Since birth I have suffered from a very rare heart condition called Epsteins Syndrome Anomoly - This means that my heart is slightly smaller than normal resulting in the four chambers being different sizes. (I have been told by my doctors in the hospital that I am unique as there is no else in NI that has my condition). I make a point of not letting my problems stop me from doing anything in life. I work fulltime and have an active social life.

My son Adam will be 20 next week. He has got Fallots and is beginning to suffer. He has no energy and is sometimes in pain. For a number of years he has said that he does not want anymore operations (2 open heart so far). Please pray for him.

Our son Brett was born Feb.2000 w/Hypoplastic Left Heart.He had the Norwood surgery @5 days old(did wonderful-out in 29 days)2 Angioplasties @3mos.& 5mos.for scar tissue in Aorta & the Bi-Directional Glenn surgery @8 mos.(out in 4 days!)Surgeries were done at Kosairs Childrens Hosp.in Louisville,Kentucky by Dr.Austin & Dr.Yeh. Brett will be due for another surgery(Fontan)when he is around 2-3yrs.of age. You would never know what he has been through to look at him(except scars on his chest). These children are fighters!!! We truly have been blessed. Anyone interested in chatting or if you have children w/HLHS & had surgeries @ Kosairs or live near our area in Ohio or Kentucky or West Virginia,please e-mail us! God Bless!

Our son Chase was born on 11-29-00. He was diagnosed with HLHS on 12-01-00. Chase had his Norwood procedure on 12-05-00 and we were home on 12-15-00. He is doing very well and his glenn procedure will be sometime this summer.An yone who wants to discuss these procedures please e-mail me.

Our son Chase was born on 11-29-00. He was diagnosed with HLHS on 12-01-00. Chase had his Norwood procedure on 12-05-00 and we were home on 12-15-00. He is doing very well and his glenn procedure will be sometime this summer.An yone who wants to discuss these procedures please e-mail me.

My son was born with transposition of the great arteries, pulmonary stenosis, a VSD, and dextrocardia. He had his first surgery at 4 days old (closed heart) and we are waiting to find out when he will be having a second (open). I am having trouble finding info on any of his conditions and would appreciate anyone with any suggested resources contacting me.

I have a 13 year old son with HLHS. He is in the seventh grade and is doing very well. Every day I thank God that he has blessed us with Chris. I can remember when Chris was first born... I often wondered if we would ever reach that "quality of life" that we so desperately wanted for our son and the entire family. I am pleased to say that although the first few years were very difficult, we have truely found quality in life. While Chris' CHD is a part of our lives, it does not consume our lives any more. I share this with you to give you hope and encouragement. I wish you and your families the very best.

Anyone interested in sending us an e-mail, please do. We would be very happy to talk to others who have new babies with HLHS. Also, people who know exactly what we deal with every day. I would like to add, this is a great web-site and I am glad I found it. Take care and God Bless to all.

I have a 6 year old boy born with HLHS. He is doing great! He had all three of his surgeries at Childrens Hosp. in Pittsburgh. He played tee-ball this summer also.

I have a 6 year old boy born with HLHS. He is doing great! He had all three of his surgeries at Childrens Hosp. in Pittsburgh. He played tee-ball this summer also.

I am a 15 year old girl currently studying in senior 2 in Tororo Girls School in Uganda.Three (3) years ago, with the assistance of my uncle, I was examined in Mulago Referral Hospital in Kampala where the doctors identified that Ihave a heart problem ( a hole in my heart). Since then and as before, I have continued to feel pain and fatigue whenever I carry out any tedious activity. Last term I even callapsed and was in sick bay for one week when the class master forced us to run around the classroom. I am a total orphan, my father died 5 years ago and my mother 3year ago, all died of AIDS and currently I am being looked after and taken to school by my uncle(husband to the sister of my late mother). I am not in any way able to sustain myself if it was not for my uncle. In Uganda, there is no facility for heart operation. I am therefore using this opportunity to appeal to guests for CHD Webring who may be able to assist me in any possible way to save my life. There is no way my caretakers can afford the cost of surgery and I am afraid that any time I may collapse. I have grown very thin for my age, I find it difficult to walk long distance, I cannot run. I hope my humble appeal meets your kind consideration.God bless you .

I am a 15 year old girl currently studying in senior 2 in Tororo Girls School in Uganda.Three (3) years ago, with the assistance of my uncle, I was examined in Mulago Referral Hospital in Kampala where the doctors identified that Ihave a heart problem ( a hole in my heart). Since then and as before, I have continued to feel pain and fatigue whenever I carry out any tedious activity. Last term I even callapsed and was in sick bay for one week when the class master forced us to run around the classroom. I am a total orphan, my father died 5 years ago and my mother 3year ago, all died of AIDS and currently I am being looked after and taken to school by my uncle(husband to the sister of my late mother). I am not in any way able to sustain myself if it was not for my uncle. In Uganda, there is no facility for heart operation. I am therefore using this opportunity to appeal to guests for CHD Webring who may be able to assist me in any possible way to save my life. There is no way my caretakers can afford the cost of surgery and I am afraid that any time I may collapse. I have grown very thin for my age, I find it difficult to walk long distance, I cannot run. I hope my humble appeal meets your kind consideration.God bless you .

I am a registered paediatric nurse now training to be a health visitor. I found this website informative, realistic and yet, full of hope. Good luck to all those visiting it with their own anxieties.

Our daughter, Caroline, was diagnosed with an Anomalous Left Coronary Artery at the age of 15 months. At the time of her surgery (15 mnths) she had sustained alot of heart damage and had to be placed on ECMO for heart support for 14 days. She had a slow recovery at first but has really blossomed in the last 2 years. She is now 6 years old and a bundle of energy! We still visit the cardiologist every year and wait on pins and needles for the results - but so far we have had great news. She was taken off her last med at her 11/2000 visit! Would welcome comments from others with this defect (it seems to be very rare) or others that have been on ECMO for heart related conditions. God Bless!

What a great site! I have a son (now 18 months old and doing great) who was born with Ebstein's anomaly -- I wish I'd known you guys were around in those first few (awful) days -- it would have been a real encouragement! My best to all --- Amy

I am a 32 year old Fallots patient interested in finding out more about adults with Fallots and what can be expected long term. (When I was diagnosed no-one had an idea.) If anyone out there is an adult Fallots patient or has any information (eg reference books) about adult Fallots - please could you let me know. I am happy to respond to e-mails from adults who have children with Fallots and may want reassurance - speaking of which, I have had no treatment since surgery at 6 years of age and live a normal life.

I was born in 1968 with what the doctors refer to as a "Full Tetralogy of Fallots". (I am not quite sure what an empty tetralogy of fallots is, but still...) I was operated on in 1974 and needed no medical treatment at all since then, but was just told to go and behave like any other child. I am now 32. This year I was hit by quite a few viruses which knocked me out and made me quite tired and I arranged to see my consultant. My heart is enlarged and I have a murmur in the Pulmonary Valve. My consultant informs me that this could just be something I have always had and that the viruses merely made me so ill that it has become a temporary problem recently. I am going to have an MRI in the new year to check that this is the case, and that the Pulmonary valve does not actually need replacing. This has made me curious to find out about other adult Fallots patients. When I was a child no-one knew about the long-term effects of Fallots. If any adults would like to discuss (or if any parents would like to chat with an adult Fallots patient) please e-mail me. If anyone has any references on adult Fallots I would be grateful. I would like to emphasise that I have lived a normal life during the past 26 years with no problems whatsoever!

My daughter was diagnosed with a bicuspid aortic valve at 15 months. She is now 4 and we were told two months ago that the aorta is narrowing and there is regurgitation in the valve. She is being monitored yearly now, and valve replacement surgery will be taking place within the next five years. Does anyone have any information on this? We have two options: a biological valve or a mechanical valve. So far I am leaning towards the mechanical. I would like to hear from parents and patients. Thank you.

I am 27 years old, I was born with congenatal heart defect. I have had 5 surgerys and doing well. My condition started when I was born. My first surgery I was 9 months old. The last was back in 9/6/2000. I feel great. God Bless and never give up!!!!.

We have a 11 month old son Harrison with HLHS and Double outlet right ventricle.He had 1st stage norwood at 2 days old and is due to have his Glenn-Shunt in the next 1-2 months.He is a real inspiration to us and is on no medications doing realy well.Would love to hear from anyone with similar conditions.

My 2 Year Old was born with Shones Complex: ASD, VSD, Hypoplastic Left Ventricle, Mitral Stenosis, Aortic Stenosis, Coarch. He as had his ASD, VSD, and Coarch repaired. He now needs mitral valve replacement. I would like to contact with parent of small children who have had mitral valve replacement. Thank you

HI, MY SON BRENNAN IS ONE WEEK OLD. HE IS PREMATURE AT ABOUT 33WKS AND HAS BEEN DIAGNOSED WITH A LARGE VSD.HE IS SHOWING SYMPTOMS BUT HAS JUST BEEN PUT ON MEDICATION. WE ARE WAITING TO SEE HOW HE RESPONDS DAY TO DAY. WE KNOW HE WILL NEED SURGERY , WE WOULD LIKE TO KNOW OF THE BEST FACILITIES COUNTRY WIDE,ALSO ANY ONE WHO HAS HAD A "PREMEE"WITH A LARGE VSD. THANKYOU AND GODBLESS.

When we find ourselves thinking of "how will I go through this...how can I bear this?" we should remind ourselves that if the person who is actually living with the condition can endure it, then we must too...after all, they are going on for US, why else would they endure the pain!

My son, Zachary, is 7 months old and has TOF. He had his repair surgery done last month and is doing great!! If anyone has any questions or advice to give, that would be great. This is a wonderful site.

I had a daughter on 10-31-00 who was diagnosed with Truncus arteriosis Type 1. She is going in for surgery on December 8th. We are all nervous here. I've been doing nothing but praying for God to give me strength for my family. He heard my prayer and has helped me accept and to have a positive outlook. Anyone else with this condition? I would love to hear from you.

i'm 19 years old and i'm currently a college freshman. when i was born my main pulminary valve was closed so when i was only 24 hours old i had open heart surgery to remove it and i was lucky enough to not have to have another surgery. i was told last year that if i ever wanted to have children or live to be a healthy adult i would have to have surgery again. i'm so scared and i don't really know what to expect. is there anyone who is living without their pulminary valve? please contact me if you have a similar situation thank you love always Meghan

Hi, i am fourteen years old and born with tretrology a fallot. (sp?) i have gone thru only one surgery and at this point i am doing fine. i have been thru some struggles and many tears. but recently i think i was given a small miracle from god. never give up hope-never. may god bless you all

Our daughter was born with Tricuspid Artresia in 1981 and at 4 yrs old, had the fontan. She is 19 yrs old now and doing well, currently attending college. Questions for anyone out there with similar background!

A small success story: At 8 months of age I had my PD repaired. This surgery was followed by a mital valve replacement at 11 months, A second replacement at 11 years of age, A mitral valve resuturing at 14 years of age and another replacement at 24 years of age. I have been on coumadin since 1972.

A small success story: At 8 months of age I had my PD repaired. This surgery was followed by a mital valve replacement at 11 months, A second replacement at 11 years of age, A mitral valve resuturing at 14 years of age and another replacement at 24 years of age. I have been on coumadin since 1972.

A small success story: At 8 months of age I had my PD repaired. This surgery was followed by a mital valve replacement at 11 months, A second replacement at 11 years of age, A mitral valve resuturing at 14 years of age and another replacement at 24 years of age. I have been on coumadin since 1972.

I am 31 weeks pregnant and my unborn son has been diagnosed with hypo-plastic left heart syndrome. Any information or experiences with this would be appreciated. Thanks!

We had twins May 00, one with CHD and DiGeorge Syndrome. Had 1st surgery (Pulmonary Banding) @ 3 months, doctors said she would not make it. She is now home doing great!!. Have 2 more surgeries scheduled (next one in the spring), but all is going well. Very interested to share experiences with anyone who has a child with CHD or DiGeorge Syndrome (22q11 chromosome deletion). Dr. Chris Knott Craig in Okla City, Okla. did our daughters surgery when others said nothing could be done- I encourage anyone who is told situation is hopeless not to give up, we didn't and are so thankful!!!.

My 20 year old husband was born with TOF. He underwent open heart surgery at the age of three. He has been ok since then but is now expecting a surgery to get a pigs valve put into his heart. He is my whole world and I cant lose him. Any info would be VERY appreciated. I am very worried about him. Also, my thoughts are out to everyone who is on the web page, Best wishes to all of you!! : ) my email is za80@aol.com and my name is Dana

My brother has Truncus Arteriosis type 1 and underwent an 8 hour op to reconstruct his heart at the age of 5 months old. We were warned that brain damage could occur which it did. He was in a vegative state but he recovered but this has left him with behavour problems for which he attends a special school. In 1996 he underwent his second op as he had out grown the parts. He suffered no further brain damage but his Trachea collapsed so a tracheaotomy was perform which he had for 6 months then he had surgery to reconstruct his trachea which was a success. He has had no futher problems till now. The doctors now think there may be a blockage in his conduit. I would really like to hear from anyone who knows of anyone with my brothers condition as i am interested in what the life expectancy is and can any futher problems be expected with other body parts.

My name is Kimberly and My Daughter Kristina was just diagnosed with a rare heart condition. Her right corenary artery connected to the pulminary artery which is pumping the wrong blood to the lungs, which is depriving her heart of the oxgen that it needs. I have a descision to make. Either do the surgery and run the risk of death or infection or nothing could happen at all. She could come out of the surgery with a healthy heart. On the other hand, i fI don't do this, she may have problems as an older child or adult. This is a tough decision. I can't seem to make it right now.

CHILD BORN 1996 WITH TRUNCUS HAS HAD FIVE OPEN HEART SURGERYS WOULD LOVE TO TALK TO OTHERS IN SIMILAR SITUTATIONS.

My daughter was born Nov 19th 1999 the day she was born her pediatrician hear a murmur and called in the pedi-cardiologist. We found out she had TOF and had surgery at 6 months. She never was a sick baby, she didn't have colic, nor did she cry much. Her health was good as far as we could tell. When my daughter had surgery it took 5 hours and it was the calmest 5 hours of my life. God settled into my heart and told me everything was going to be fine. She has gained 10 lbs and she bounces all over the house. Her surgeon was an awesome man who has been doing this for about 15 years. God Bless these doctors.

I have a 2 year old name Tanner,who has just been diagnosed with Coarctation of the Aorta, and will need surgery in two weeks. I dont know much about the coarctation of the aorta, but would like to hear from anybody who's been through this or knows anything about it. Tanner also has a bicupsid vavle,which will be check on a reguraly basis,and a supravalvar ring which will be check regularly too. Please e-mail me if you know anything,Im really nervous about this.

Hi All Came across the web page while looking for information on heart defects. I am 23 weeks pregnant and had a fetal echo done last week as a precaution (my husband had a brother who died a month after birth of a congential heart defect). Turns out there is no division between the atrium values of the baby's heart and possibly a break in the wall between the 2 ventricle valves. We decided to have a blood test done to determine whether the defect is chromosonal or environmental, also to check for other possible related problems. We have spent an agonizing weekend waiting and cannot expect the results until Wednesday (Nov 15) when we will get to talk to a cardiologist. I do not know the technical name of the defect and it has not been diagonised with certainty yet, but the radiologist we spoke to in the fetal assessment unit referred to it as a "cushion defect". Anyone with any information, please contact us, we have no idea what the prognosis will be, the waiting is killing us. Thanks

My little girl was born on 2-2-2000 she was diagnosed with dextrocardia with situs inversus and had an asd and a vsd. she had surgery 4-25-00 to repair the two holes in the heart. She is now doing great. If I could help any one with this same condtion or any condtion please e-mail me and any responds would be great.

Group Health and Paxil ruined my life and now I struggle to take care of my CHD baby. I used to be super mom but now I am a basket case.

My blessed grandson was born 2 days ago (ultrasounds showed fetal growth retardation, placental calcification, enlarged heart ventricle) 2 1/2 wks. early, 4 1/2 lbs. We are awaiting echocardiogram results & have heard coarction of aorta mentioned.

I have a 2 and a half year old son that was born with 5 different heart defects...he has numerous surgeries and is doing well...he needs to have another surgery right before christmas....but for the most part is doing fine!We also have another son with different birth defects and our prayers go out to all with simular probs....

Hi! My middle daughter, Olivia, was born in 1987. shortly after her birth, we learned that she had Down Syndrome and congenital heart disease - AVSD. She underwent open heart surgery at 7 months and has been healthy (for the most part!) since then. We have another surgery coming up to replace her mitral and aortic valves. I would certainly be glad to offer support to any families dealing with what we have as well as am asking for support around the issue of cumidin. She will have to take it the rest of her life - after usrgery - and that really concerns me. God bless to all of you out there!

My 7 month old baby, Haley, was born with corrective transposition of the great vessels, an ASD, VSD, and pulmonary stenosis. She had open heart surgery on Nov. 2, and is doing great! God is great!

Hello!!! I am 17 years old and I was born with TOF. For any new parents out there who need to talk about what it's like or what happens to their children with TOF, please feel free to e-mail me. I would be more than happy to share with you what I know.

MY 20 month old daughter has patent ductus arteriosus and is going to have it repaired by catheter procedure on wednesday . I have been really worried about the op (which mother wouldn't be?) but after reading the stories on this page I am feeling both more reassured and confident , and extremely lucky that that is the only problem . Good luck to you all you are in our thoughts.

This is a great page! I am 19 years old and was born with TOF and CHARGE syndrome that involved all kinds of other problems. I had open heart surgery when I was 4 and I haven't had any major problems since. I am currently in college at University of Kentucky. If you have any questions or are my age and have CHD please email me.

My daughter, Hannah, was a full term twin born on 9/21/1995. At 9 days old she was on the operating table having coarctation of the aorta repair surgery. She was diagnosed with severe juctxductal coarctation of the aorta, bicuspid aortic valve, and mitral valve defects. Now, at age 5, she is recoarcting and her mitral valve defects have gotten more severe- her cusps on the mitral valve have fused, and so she now has mitral valve regurgitation on top of the aortic defects. She is going to need open heart surgery to fix the mitral valve in the near future, along with balloon angioplasty for the re-coarctation. To complicate things further, she has a blood disorder called ITP (idiopathic thrombocytopenia purpura) where her body attachs and destroys her own platelet's as if they were a virus- so in turn she doesn't clot, has low platelet counts and other complications. The course of treatment at this point is to wait until her organs start shutting down, like they did at the onset of the coarct- and cardiac arrest, then possibly hook her up to donor blood and hope she makes it. I am very worried about her outcome due to the complications of these disorders overlapping eachother. If anyone is dealing with both needing heart surgeries and bleeding disorders/diseases, I would love to talk with you. I have only met one person with a child with both disorders- and unfortunately she did not make it through her heart surgeries, at 11 years old. The cardiologists/heart surgeons are too afraid to go in, even doing the balloon angioplasty through the femoral vein, due to the risk of her bleeding to death. Thanks for anyone who can help me decide what is best for my daughter!!!! Love and prayers to all!! My email is VReeves@exec.swrcb.ca.gov Thank you and god bless--- Valerie Reeves

Our first child was born yesterday, only 1 day early. Today we found out that he has TOF, what a rollercoaster ride. Went from the best day to worst day in mine and my wifes life. Nicholas (baby) is still in the hosp, surgury is not expected for another month. I have no information about TOF, other than what I've read on the internet. Mostly just technicial documentation. If anyone has any information about recovery rates, etc PLEASE let me know. e-mail Chris and Jessica @ cvan911@yahoo.com

Three years ago my 4 year old daughter was diagnosised with a pulmonary stenosis and VSD. The doctor discovered it when I took her in for one check up. Thanks to God that she has never required any type of surgery to correct it yet. The doctor put her on medication for about a year. Because she was doing so well that he order to take her off the medication. Ever since she was taken off the medication she has gained so much weight and is very healthy for a child that is sick. Although she did develop a learning disablilty and speech delay. Other wise than that she is doing fine up until about six months ago. Her doctor stated that her congential heart defect is getting worse. He was afraid that she would have to have surgery before her next follow up with him. Now that she is attending public school it has put a lot a of stress on her. The doctor says that is causing her heart to work more faster than before. She is starting to get more tired and sleeps more. I wonder is that common for her to feel that way. She is not really interested in doing anything anymore like she use to. Now I hear her say I love you mommy more often than before. She complains alot about her chest always hurting her. She is starting to get sick more often than before. Well she goes to see her doctor in two days. I have to wait til then to find out what the doctor is going to tell me. He already had told me that her condition was getting worse and it needed to be corrected. He is just waiting to see how long she going to be able to hold out. I would like for you to email at mgarcia79412@yahoo.com or ggarcia48@hotmail.com. The first email is my daugther's email. Thank you. Genie and Mariah.

Hi, i am Abhay Bhange i am a father of 4 year old son name Parth who is suffering for the conginatal heart trouble name Fallots Tetrology since his birth we come to know this when he was of just 2 months of age . We rush to cardiologiest and we were told about this very rear trouble with my son. But our doctors DR.HIREMATH JAGDISH AND DR. RANJEET JAGTAP informe us all the details of this trouble and we have kept him on oral treetment for a year and so and then we planned the first surgery i.e. B.T.shunt in april 1997 he was of 1.5 year old. that shunt help us form makeing him out of dangours and free form cynotic spells for a two to three year and now we are plnaning to make a total conrrection under the treetment of the same doctors mentioned above .we are not entital for any insurance in india for such big expenseive surgery here as it is a conginental problem. we are doing hard to manage the fund from friends relative and social orgnasation to arrenge the live saving surgery of my son . I found this site very much useful to know exact details of this trouble of my son and i am very much gretful to the site for the information and sharing the experince of parants about the same trouble ...well i wish to join the group of parants of the same situation to share my experince and know their experince .thanks to all of u and if u can any helping orgnasaiton for the funidng pl let me know at my email address i.e. abhay_bhange@hotmail.com regrads abhay

It is a nice and useful site for the parants who are suffering the heart desease with their kids abhay

MY DAUGHTER MAKENNA ROSE WAS BORN ON FEB. 11, 2000. SHE WAS BORN WITH DOUBLE OUTLET RIGHT VENTRICLE, VSD, PS, AND RIGHT VENTRICLE HYPERTROPHY. ALL OF THIS WAS DUE TO TURNER SYNDROME, EVENTHOUGH IT IS NOT THE COMMON HEART DEFECT SEEN WITH TS. SHE HAS HAD THE BT SHUNT OPERATION AT 1 MONTH OF AGE AND IS DUE TO HAVE THE CORRECTIVE SURGERY AT 1 YEAR OLD. WE ARE VERY CONCERNED ABOUT THAT. WE HAVE BEEN IN CONTACT WITH PARENTS WITH CHILDREN THAT HAS TOF( WHICH IS SIMILAR TO DORV) BUT NOT ANYONE WITH DORV. PLEASE CONTACT ME IF YOU HAVE A CHILD WITH SIMILAR PROBLEMS. IF THERE IS ANYONE THAT HAS TS AND DORV PLEASE CONTACT ME. GOD BLESS AND CHERISH OUR MIRACLES FROM GOD.

MY DAUGHTER MAKENNA ROSE WAS BORN ON FEB. 11, 2000. SHE HAS DOUBLE OUTLET RIGHT VENTRICLE,VSD,PS AND RIGHT VENTRICULAR HYPERTROPHY. THIS WAS ALL ASSOCIATED WITH TURNER SYNDROME EVENTHOUGH IS IS NOT THE COMMON HEART DEFECT USUALLY SEEN WITH IT. SHE HAS HAD A BT SHUNT OPERATION AT 1 MONTH OF AGE AND WILL BE HAVING THE CORRECTIVE SURGERY AROUND 1 YEAR OLD. WE ARE VERY CONCERNED ABOUT IT. I HAVE BEEN IN CONTACT WITH A FEW WOMEN WHO HAS A CHILD WITH TOF(WHICH IS SIMILAR TO DORV). I WOULD LIKE TO TALK WITH SOMEONE WITH DORV OR HAS A CHILD THAT HAS DORV. ESP. ANYONE THAT HAS TS AND DORV. GODBLESS ALL AND CHERISH OUR MIRACLES FROM GOD.

My son was born on October 4,2000. He had a spontaneous pneumothorax at birth so he was placed in the NICU for treatment. While he was there, he went into congestive heart failure. He was shortly diagnosed with a coarctation of the aorta. He was transported to Denver Children's Hospital for surgery. His surgery was on October 10 and he came home on October 14! He went from being on lists of medications, a ventilator and IVs to sustain him to no meds, no monitors, no oxygen (yet). We still have tons of appointments etc. but a very good outcome thus far. It has been a long and scarey road!

Hi, my name is Lauren and I am 16. I have a daghter who is 9 months old. I found out during my pregnancy that I have an atrial septal defect. I am going to have surgrey to correct it on November 2, 2000. I was wondering aoubt some things. If any one can answer my questions please let me know by e-mail. First how long is the apporximate hospital stay and how long is the recovery. My final question is how long are you on a ventilator? I would greatly appreciate it if anyone can anxwer these if not I hope all are doing well... With Love, Lauren and Annabelle

Hello CHD Friends, I just wanted you to know that my hearts and prayers are with you all... It is an honor to be part of such a special group. My daughter, Alexa, went home to Heaven in May of 1999, and is now "8 in Heaven". I miss her and love her with all my soul. If you like, please come visit Alexa at http://members.tripod.com/AlexaMcClure AND http://members.xoom.com/mpasurvivor/members/mcclurej.html. God bless you all--- God bless our precious angels in Heaven!!! Julianne

we have a Beautiful 2 1/2 year old little boy (Tanner) who has just been diagnosed with coarctation af the aorta and will need surgery soon. We are worried sick about this and would like to hear from other parents about there experiences

hi a have a daugter who just dx with coartion of the aortha she is 7 months old.and drs. said this disease also has cut off blood supply to one of her kidneys and it does work. we go a see a heart dr. 10/23/00 her ped. dr. we the one who dx. her. please can someone tell me what to expect.cause this is very new to me.someone help.answer my questions.thank you.

God bless you all and my prayers will be with you and your families, for I know first hand how difficult it can be to have heart problems, and loved ones with heart problems. Good luck to you all.

the above name is spelled Romano just like the cheese!

Hello everyone my name is david and i am a 30yr old Film Actor/Producer/Director living with TOF . In a few short months i will be Producing , Directing a Documentary on TOF and myself. I would love to hear from everyone , also anyone wanting to take part in this , i couldn't ask for anything more . I live in L.A. and i am doing the leg work of this documentary in Rhode Island . Please , Anyone willing to help e-mail me . When this documentray is done and if any money comes from it i will give 50% to RIACC . That stands for Rhode Island Asso. Of Cardic Children . Contact me for more info. I belive that the one reason for me being alive today is to do this documentary for myself and all the kids then and now and for the future. Thank you

Hi All Like All of you I to have had heart experiences, with my son Matthew born on December 28 1991 I was told while 6 months pregnant he wouldnt be able to survive bith and I should terminate the pregnacy.. well after considering what was told to us, my husbad and I choose to leave it in God's hands and let the baby be born. He was born with Dextrocardia, Asplenia, Complex cyanotic congenital heart disease: double outlet right Ventricle with complete AV canal defect with severe pulmonary stenosis, anomalous venous return. While its been a long road and MANY trips in hospital it seems to have paid off. That lil boy that wasn't suppost to live is soon to be 9 years old! Just to name a few of the Many surgeries he's had was Blalock Taussig Shunt, Glenn Shunt, Fontan, LOTS of catherizations, the last heart procedure that was done was a clinical trial of a device called a Cardo-Seal. That seems to have worked wonders for him in the last year. Along with these heart problems hes had other things such as gallstones, liver , lung problems. To look at him you wouldnt know he was sick. He keeps up well considering.. Boston's Childrens Hospital has been great, they offer alot of support for families but it doesnt hurt to get support from people who live it daily so please feel free to contact me Id love to help each other out!

My daughter Kendall was born on Christmas Eve 1999. We found out a week later that she had a coarctation of the aorta. She had that repaired, at 11 days old, and a month later we found out that she had an anomolous left coronary artery. She had that repaired at 2 1/2 months and she is doing excellent. She is only 9 months and walking! She also has a bicuspid aortic valve and mitral valve regurgitation that her doctors are 'watching'. Good luck to everyone. If anyone has similar situations please e-mail at madholcomb@earthlink.net.

We have a baby born with Tetrallogy of fallot, our baby will be in surgery next year 2001. We would like to take our daughter to USA, in order to perform her corrective surgery. We are looking for any organization to suppot us, in a financial way, due we are limited in this. If anyone knows any organization, PLEASE contact us. Thank you..

I'm a 20 year old girl who was born with a complete AVSD. After surgery in 1985 to repair the defect, I've lived a pain-free, complication-free life. Recently, though, I've been having mild heart-pain on sporratic occasions. After my last "pediatric cardiologist check up" (at 16 yrs), I was told that the patch covering a hole might be leaking. Has anyone else heard of this happening, or know what my outcome might be? Also just wondering if this might be causing my pain?...if anyone can help, or if anyone whose children might be undergoing AVSD repair, and would like to ask me questions (about later life), please don't hesitate!

My daughter is 5 months old, and was diagnosed with complete AVSD, left atrial isomerism, PDA, double outlet right ventricle, pulmonary stenosis, polyspenia, biventricular AV connection, azygous vein to left SVC, pulmonary veins to left sided left atrium, hepatic veins to right sided left atrium, common atrium, left aortic arch, minimal AV valve regurgitation. She was 9 hours old when we were told all this, and we were also told that she also had a central liver and a right sided stomach. 5 months on we are still stunned, and Bethany has already had a BT Shunt operation. I would like to hear from other people with children with similar conditions, for help and advice (and moral support!!!)

I am a 20 year old female living with Transposition of the great vessels. Yes i said Living with, not dying from. I was 2 1/2 months old when i had my first heart surgery, a schumacker repair. Eighteen years later i had my second heart surgery, when i had a pacemaker embeded under my left clavical. I am doing fine now and I am doing my part to educate people about heart defects by speaking at hospitals, schools and private affairs (eg. girl scouts, church events) I do however, have few limitation. The extreem heat and cold bother me but ill survive, because thats what i am, a survivor, and so are ALL of you that are on this site. I know what its like not to be able to play and keep up with other kids. I know what its like to have people teeze you about your scars or deformaties. I know what is like to listen to your doctor tell you that you may not live to be a mother, or father or even walk down the isle at graduation, you wedding, or your childrens wedding. If there is anyone who knows what i am talking about and wants to chat thats cool. If you are a parent that has questions about CHD's I'll try to help. GOOD LUCK TO ALL OF YOU AND DONT GIVE UP HOPE!!

MY DAUGHTER RUTHIE HAS JUST TURNED SIXTEEN. SHE HAS TRICUSPID ARTRESIA. I AM LOOKING FOR SOMEONE WHO KNOWS OR HAS GONE THROUGH A SECOND FONTAN PROCEDURE. BECAUSE OF ARYTHMIAS AND AN ENLARGED HEART RUTHIE WILL NEED A PACEMAKER, ANOTHER FONTAN PROCEDURE, AND MORE ABLATION.

Our Daughter, Lauren was born 8-8-00, and was diagnosed with Tetrology of Fallot. you wouldn't know she has a heart defect at this point. We are looking for support, contacts, advice, and educational info about TOF. Thank you

My sister is 19 weeks pregnant with identical twin girls. One of the girls has a small amount of fluid on the brain, and a small omphalocele. The geneticist instists that a child with TWO genetic defects has an underlying MAJOR genetic defect and keeps hinting toward trisome 18? What exactly is it? They say if the babies have it they will die within as short of a time as minutes to as long as a few months. Any help would be forever appreciated. Is trisome 18 a heart defect? Because right now, the ultrasounds see NO heart defects whatsoever. Thank you. I have no idea what I am looking for.

SORRY, MY TYPING HAS BEEN POOR LATELY. THIS IS MY CORRECT E-MAIL ADDRESS.

MY ANGEL WENT HOME MAY 7, 2000. HIS LITTLE BODY COULDN'T HOLD ON ANYMORE. HIS HEART BEING O.K. I MISS HIM SO MUCH, AND HAVE DREAMS ABOUT HIM OFTEN. IT KINDA REMINDS ME OF THAT SONG BY CREED "HIGHER" I DON'T WANT TO WAKE UP,BECAUSE WHEN I'M DREAMING ABOUT HIM. I'M SO CLOSE TO HIM. GABRIEL PETER MACALUSO 1-14-98-5-7-00.

My daughter Crescenzia was born one week ago, and was diagnosed with VSD. We're told she'll require surgery in three to five months to correct it, and we were given medication in the meantime. My wife and I are frightened but optimistic about her condition, and I am glad to see pages like this exist. Anyone with any information feel free to e-mail me. Thank you all very much for your courage and your stories. - Cenzie's Dad

Hi all, my five day old daughter Tayler was diagnosed with critical aortic stenosis the day after birth. She has had 1 cath with a gradient reduction from 65 to 26. Now she is suffering from mitral regurgatation and is still on a ventilator due to the Mitral condition. The cardiologist says her ventricular response since the cath is excellent but is waiting for a reduction in the back-flow which is causing fluid build up in the lungs. I am still in a state of shock over the whole situation and am reaching out for support and feed back from parents of similar CHD's. I feel guilty because I am trying to maintain a small degree of seperation from my child in case of the worst. I am praying every moment for her recovery and want to be reassured that her condition and responses thus far are favorable and on a path to recovery. Please E-mail if you can provide some positive reinforcement. Thank You and God Bless the Children!

Happy to have found this site! Our son is seven months old and has been diagnosed with pulmonary artresia with a large VSD and is awaiting surgery. I would love to hear from families in a similiar situation.

My son Henry was diagnosed with a bicuspid aortic valve that is stenotic when he was one week old. My husband and I were devastated that our "perfect" little boy had this awful defect. He is now 6 months old and his gradient has been around 68 since he was a month old. I was told that he would probably need a catheterization by the time he starts to walk. Emotionally my husband and I have been on a roller coaster. I would love to hear from anyone that has a child or from a child with this condition. I have one women in my state that daughter is 12 that has been through a few catheterizations and talking with her helps. My world seems so small not knowing anyone else to talk to about this. Please contact me. God bless all of our little angels.

My niece, Sarah, was born August 9, 2000 at Children's in Boston. She has pulmonary artresia (no pulmonary valve) with intact ventrivular septum, ASD, insufficient tricuspid valve, etc. She underwent her first surgery three days after she was born and she is doing fabulous! We thank God for his miracle and for getting us safely to Boston every day. God bless all of you for the wonderful, patient, strong people you are! Hang in there!

Hi! should have been a fleeting visit to your website whilst looking for info on Fallots Tetralogy but I couldn't resist reading on and on..... Keep up the good work!

Hello As all of you know by now. I'm the mother of James and Jeffrey Wirtz ages 2 and 1. James Wirtz has ASD,VSD, Aortic Stenosis, Digeorge Syndrome, and Small left heart.James Has had two heart surgeries, and 1 heart cath. Jeffrey Wirtz has a VSD, was diagnosed at first with Tetrology of Felot, but it continued to get better as he grew. He also has DiGeorge Syndrome, and Congenital Torticollis. I was born with a VSD that healed by the time I was one, and I also had Pallet Surgery/w DiGeorge Syndrome. Now I have an enlarged right ventrical, and blood flowing where it shouldn't be. My boys are all doing well right now. Only have to go to University of Michigan to see an ENT right now. Just for a re check. Hope to here from everyone soon. Renee Wirtz..

Hi everyone, I am a 21-year-old who has Pulmonary Atresia with VSD and never had it repaired. As most with this CHD have it repaired in childhood, I know nothing about how it affects adults and I would like to hear from anyone who knows anything about it. I am pretty active for my condition, so I hear, I am a lifeguard, love to go backpacking, etc. but just so you don't get the idea that I'm completely healthy, I am cyanotic, and get short of breath VERY easily. Please email me if you can tell me anything. Thanks!

I was born with pulmonary hypertension and transposition of the greater arteries.I am a 21yr old female. I would have completed my high school studies in 1997 but do to my condition i was unable to do so. since then I have tried to keep a job without much luck. there are no disability grants or anything like that for white people in my part of the country. now, I would like to study so =next year I would like to go back to school to finnish my high school so that I can go to University. the problem is ,however, finances. Does anyone out there know of a scholarship or bursary fund for people with CHD? or of any organizations (or cardiologists)or such to which I can apply for funding in the USA or anywhere? PLEASE SOMEBODY HELP!!!I WANT TO STUDY

Hi I was born with Sereve TOF with Double outlet Ventricle, ASD, VSD, PA,PS, Rv Hypertophy and Bootshape heart. I will be having more surgery within the next year to repair my PA,PR, and PS. I have had 2 bt shunts done one Correctove repair in 1982 at Unviersity Hospital. I am 23 years old. If you wish to contact me my email is above.

Hi everyone -- what inspirational messages! At 36, I was diagnosed with partial anomolous pulmonary venous return with an ASD. My cardiologist recommended wait and see but I am curious as to whether any other adults have been similarly diagosed and recommended to "watch" - ? Look forward to any throughts. God bless.

My daughter was born April 4th and diagnosed with truncus type III on the 8th. She had her first open heart surgery when she was 1 week old. They found she also had Ductus Arteriosis and an Interrupted Aortic Arch. She had her second open heart surgery at 7 weeks to put a stent in her Pulmonary Artery. She is due to have the stent replaced in December. I've been looking for someone to talk to about this since it happened. I would love to get in touch with anyone else who has been through the same thing, especially any adults who have been through this.

sorry I now have my own email address but if there is anyone out there around the age of 14 with a heart defect would you please email me thanks

DESTINY IS 19 DAYS OLD AND WAS DIAGNOSED WITH VSD BY RILEY CHILDRENS HOSPITAL. WE JUST CAME TO VISIT AND FIND OUT MORE ABOUT IT.

Anything that has to do with the replacement of heart valves is an interest to me. I had a mital Valve replacement in 1995 and doing better and better.

My son Morgan Collins is 8 months old and has hypoplastic left heart syndrome and coarctation of the aorta. I would love to hear from anybody who has one or both of the conditions. His coarctation was repaired at 3 days old, while his HLHS has been left to be observed until he is 1 when we will know the answers, due to them not knowing whether ann operation will be neccessary. The hospital that takes care of him is the magnificent Great Ormond Street Hospital (GOSH) in London. Anyone who wishes to speak to us about this problem, please email. Thank You

Hi, I'm a 21 year old who's had 3 open heart surgeries, one at age 17 when I had my ASD repaired, then 2 at 20 I had my Mitral Valve Replaced. If you have any questions to ask me or need any advise, Please email me, also you can check out my website!

i want to know more about tof due to my nephew having the syndrome. he was also born with a hole in his heart and an extra muscle in his heart. his pulmonary artery was enlarged and he also has cardio fasial sundrome. if anyone out there would like to contact me and share their story feel free to contact me at my email address.

I have a 2 1/2 yr. old with truncus arteriosis and coarctation of the aorta. She has had 2 surgeries and will have her 3rd in January. I would love to hear from anyone with truncus arteriosis.

I APPOLOGISE FOR GIVING THE INCORRECT E-MAIL ADDRESS, AND FOR ENTERING THE STOREY SO MANY TIMES. PLEASE DO CONTACT ME ON: dionh@hixnet.co.za

I FEEL GREAT HAVING READ THE STORIES - I AM NOT THE ONLY ONE WITH A BABY WITH A HEART CONDITION. MY BABY "EVAN" WAS DIAGNOSED AT FOUR WEEKS WITH FALLOTS TETRALOGY AND PULMONARY ATRESIA. THE FIRST SIGN WAS THAT HE WAS NOT GAINING WEIGHT, AND BATTLED WITH FEEDING. HE WAS VERY LETHARGIC AND NEVER CRIED. HE ALWAYS HAD VERY SWEATY HANDS AND FEET. DURING FEEDS HE USED TO SWEAT A LOT. AT SIX WEEKS HE HAD HIS FIRST CARDIAC CATH. AT FIVE MONTHS HE HAD OPEN-HEART SURGERY. HE STILL BATTLED WITH HIS ENERGY LEVELS AND WEIGHT GAIN, SO HE HAD ANOTHER CARDIAC CATH AT ELEVEN MONTHS, AND SOME OF THE BLOODFLOW TO THE LUNGS WAS COILED OFF, AS HE HAD TOO MUCH FLOW TO THE LUNGS. ALL THIS TIME SINCE BIRTH EVAN WAS IN CARDIAC FAILURE. IN THE LAST SIX WEEKS EVAN HAS HAD A DRASTIC IMPROVEMENT. HE HAD MUCH MORE ENERGY AND HAS STARTED CRAWLING. HE HAS BEEN TAKEN OFF ALL MEDICATION, AND IS OUT OF CARDIAC FAILURE. HOWEVER HE IS STILL VERY SMALL AND PHYSICALLY DELAYED. EVERYDAY I THANK G-D AND THE WONDERFUL TEAM OF DOCTERS THAT ATTEND TO MY BABY FOR GETTING HIM THIS FAR, AND I KNOW THAT THEY WILL CONTINUE TO BE SUPPORTIVE AND GET US THROUGH THE REST OF THE PROCEDURES WITH EASE. MY BEST ADVICE TO ALL OF YOU OUT THERE, IS TO BE POSITIVE, HAVE LOTS OF STRENGTH AND MOST OF ALL TO HAVE CONFIDENCE IN THE DOCTORS WHO ARE LOOKING AFTER YOUR CHILDREN - THEY KNOW EXACTLY WHAT THEY ARE DOING. I WOULD LOVE TO HEAR FROM ANYONE WHO IS GOING THROUGH THE SAME AS WHAT I AM. PLEASE CONTACT ME.

I FEEL GREAT HAVING READ THE STORIES - I AM NOT THE ONLY ONE WITH A BABY WITH A HEART CONDITION. MY BABY "EVAN" WAS DIAGNOSED AT FOUR WEEKS WITH FALLOTS TETRALOGY AND PULMONARY ATRESIA. THE FIRST SIGN WAS THAT HE WAS NOT GAINING WEIGHT, AND BATTLED WITH FEEDING. HE WAS VERY LETHARGIC AND NEVER CRIED. HE ALWAYS HAD VERY SWEATY HANDS AND FEET. DURING FEEDS HE USED TO SWEAT A LOT. AT SIX WEEKS HE HAD HIS FIRST CARDIAC CATH. AT FIVE MONTHS HE HAD OPEN-HEART SURGERY. HE STILL BATTLED WITH HIS ENERGY LEVELS AND WEIGHT GAIN, SO HE HAD ANOTHER CARDIAC CATH AT ELEVEN MONTHS, AND SOME OF THE BLOODFLOW TO THE LUNGS WAS COILED OFF, AS HE HAD TOO MUCH FLOW TO THE LUNGS. ALL THIS TIME SINCE BIRTH EVAN WAS IN CARDIAC FAILURE. IN THE LAST SIX WEEKS EVAN HAS HAD A DRASTIC IMPROVEMENT. HE HAD MUCH MORE ENERGY AND HAS STARTED CRAWLING. HE HAS BEEN TAKEN OFF ALL MEDICATION, AND IS OUT OF CARDIAC FAILURE. HOWEVER HE IS STILL VERY SMALL AND PHYSICALLY DELAYED. EVERYDAY I THANK G-D AND THE WONDERFUL TEAM OF DOCTERS THAT ATTEND TO MY BABY FOR GETTING HIM THIS FAR, AND I KNOW THAT THEY WILL CONTINUE TO BE SUPPORTIVE AND GET US THROUGH THE REST OF THE PROCEDURES WITH EASE. MY BEST ADVICE TO ALL OF YOU OUT THERE, IS TO BE POSITIVE, HAVE LOTS OF STRENGTH AND MOST OF ALL TO HAVE CONFIDENCE IN THE DOCTORS WHO ARE LOOKING AFTER YOUR CHILDREN - THEY KNOW EXACTLY WHAT THEY ARE DOING. I WOULD LOVE TO HEAR FROM ANYONE WHO IS GOING THROUGH THE SAME AS WHAT I AM. PLEASE CONTACT ME.

I FEEL GREAT HAVING READ THE STORIES - I AM NOT THE ONLY ONE WITH A BABY WITH A HEART CONDITION. MY BABY "EVAN" WAS DIAGNOSED AT FOUR WEEKS WITH FALLOTS TETRALOGY AND PULMONARY ATRESIA. THE FIRST SIGN WAS THAT HE WAS NOT GAINING WEIGHT, AND BATTLED WITH FEEDING. HE WAS VERY LETHARGIC AND NEVER CRIED. HE ALWAYS HAD VERY SWEATY HANDS AND FEET. DURING FEEDS HE USED TO SWEAT A LOT. AT SIX WEEKS HE HAD HIS FIRST CARDIAC CATH. AT FIVE MONTHS HE HAD OPEN-HEART SURGERY. HE STILL BATTLED WITH HIS ENERGY LEVELS AND WEIGHT GAIN, SO HE HAD ANOTHER CARDIAC CATH AT ELEVEN MONTHS, AND SOME OF THE BLOODFLOW TO THE LUNGS WAS COILED OFF, AS HE HAD TOO MUCH FLOW TO THE LUNGS. ALL THIS TIME SINCE BIRTH EVAN WAS IN CARDIAC FAILURE. IN THE LAST SIX WEEKS EVAN HAS HAD A DRASTIC IMPROVEMENT. HE HAD MUCH MORE ENERGY AND HAS STARTED CRAWLING. HE HAS BEEN TAKEN OFF ALL MEDICATION, AND IS OUT OF CARDIAC FAILURE. HOWEVER HE IS STILL VERY SMALL AND PHYSICALLY DELAYED. EVERYDAY I THANK G-D AND THE WONDERFUL TEAM OF DOCTERS THAT ATTEND TO MY BABY FOR GETTING HIM THIS FAR, AND I KNOW THAT THEY WILL CONTINUE TO BE SUPPORTIVE AND GET US THROUGH THE REST OF THE PROCEDURES WITH EASE. MY BEST ADVICE TO ALL OF YOU OUT THERE, IS TO BE POSITIVE, HAVE LOTS OF STRENGTH AND MOST OF ALL TO HAVE CONFIDENCE IN THE DOCTORS WHO ARE LOOKING AFTER YOUR CHILDREN - THEY KNOW EXACTLY WHAT THEY ARE DOING. I WOULD LOVE TO HEAR FROM ANYONE WHO IS GOING THROUGH THE SAME AS WHAT I AM. PLEASE CONTACT ME.

I FEEL GREAT HAVING READ THE STORIES - I AM NOT THE ONLY ONE WITH A BABY WITH A HEART CONDITION. MY BABY "EVAN" WAS DIAGNOSED AT FOUR WEEKS WITH FALLOTS TETRALOGY AND PULMONARY ATRESIA. HE OPENHEART SURGERY AT FIVE MONTHS OF AGE. WE WENT THROUGH A TOUGH TIME, BUT THANK G-D HE IS DIONG WELL! HOWEVER HE IS VERY SMALL AND IS DELAYED PHYSICALLY. PLEASE CONTACT ME IF YOUR CHILD HAS HAD A SIMILAR PROBLEM.

This website is wonderful. My daughter, Alyssa, just turned one year old last week. She was diagnosed at 11 weeks old with Transposition of the Great Vessels, DORV, 2 VSD's, ASD, Coarctation of the Aorta, and hypoplastic RV. The doctors refer to her as Taussig-Bing abnormality. Her condition is very rare with so many defects together. She was almost gone when we found out what was wrong with her. She has had three heart surgeries, the last one in February where her surgeon did her switch operation. She is a miracle and is doing wonderful. Please feel free to e-mail me if you have any questions about Alyssa's condition or what we have gone through.

My daughter Rylee was diagnosed w/ Tricuspid Atresia w/ ASD, VSD, and Hypoplastic Right Heart. She was born May 27, 2000 and has had 2 heart catheters and one surgery to put in a central shunt. She will have to have the Glenn shunt and Fontan eventually but all is going well for the time being. She was recusitated for and hour and a half the morning after her surgery and they got her heart rate established again finally. She truly is a miracle. I would like for other parents to email me w/ children w/ defects like hers and let me know how they have faired developmentally, etc. God Bless all parents of the heart babies out there.

Hi everyone, I have a 6 month old daughter who has fallots tetralogy, she will be getting her operation done befor christmas this year some time, would like to hear from people who have had this type of treatment done or have a baby who had a repair done would like to know whats involved ? how long the operation takes and how long the child whould be in hospital for ? Would be Nice to Hear from some other parent so i know what to expect thanks :)

My son Liam is 12 years old and when he was 1 year old he underwent three open heart operations. He was born with Mitral Stenosis. He was finally fitted with an artifical valve after 9 weeks in hospital. He takes warfarin and is due to undergo his fifth operation (he had 2 catheters) in the near future. It is good to share information with other parents as it shows how well a lot of these children do and constantly astound us all. God bless to all who read this site and who have children with heart defects or have them themselves. Donna England

My daughter underwent open heart surgery for total repair of Tetralgy of Fallot when she was 8 weeks old. She is doing good now. She is 3 years old. Would be glad to hear from others with ToF or who have children with ToF.

My daughter Sydney was born on May 12th and was just recently diagnosed with coarctation of the aorta.

hi, my name is Elisanna and i am 17 if you have CHD and are around my age or even if you aren't and wanna chat e-mail me.

Hi My name is morgan I am 13 if you have a CHD and you are close to my age please email me

Hi everyone, I have a 13 year old daughter who has fallots tetralogy, she has had two open heart surgeries, one at 16 months and another at 3 years. She is now waiting for her next one. If anyone has a daughter around the same age with the same problems perhaps they would like to write.

Hi everyone, I have a 13 year old daughter who has fallots tetralogy, she has had two open heart surgeries, one at 16 months and another at 3 years. She is now waiting for her next one. If anyone has a daughter around the same age with the same problems perhaps they would like to write.

Hi everyone, I have a 13 year old daughter who has fallots tetralogy, she has had two open heart surgeries, one at 16 months and another at 3 years. She is now waiting for her next one. If anyone has a daughter around the same age with the same problems perhaps they would like to write.

I have a six month old child with Total Anomalous Pulmonary Venous Connection. He also has asplenia syndrome which means he has no spleen. We have been through one surgery and will be having our second for the Bidirection Glen Shunt next month. WHile I am nervous I know God will take care of my little one. Zayne is doing so well right now. He is sitting alone, and trying to stand. Today he said mama and dada. He is developing on target however does not want to crawl. We had no idea any of this was happening so be thankful you have some advance warning so you can research this. Zayne had to air lifted to Ft. Worth and i had to stay behind. I went the next day. The doctors and nurse were wonderful. However like others have said, don't be afraid to speak up. Zayne ended up with an IV burn which needed additional surgery for a skin graph on his hand when the IV came out. We did not push them to check it despite his hand swelling. I sure will next time. I have learned to speak on my childs behalf and thank God for him every day. God Bless you all.

I have a six month old child with Total Anomalous Pulmonary Venous Connection. He also has asplenia syndrome which means he has no spleen. We have been through one surgery and will be having our second for the Bidirection Glen Shunt next month. WHile I am nervous I know God will take care of my little one. Zayne is doing so well right now. He is sitting alone, and trying to stand. Today he said mama and dada. He is developing on target however does not want to crawl. We had no idea any of this was happening so be thankful you have some advance warning so you can research this. Zayne had to air lifted to Ft. Worth and i had to stay behind. I went the next day. The doctors and nurse were wonderful. However like others have said, don't be afraid to speak up. Zayne ended up with an IV burn which needed additional surgery for a skin graph on his hand when the IV came out. We did not push them to check it despite his hand swelling. I sure will next time. I have learned to speak on my childs behalf and thank God for him every day. God Bless you all.

Wonderful Web Site. I have a 9 yr. old daughter with hypoplastic ventricle. Fontan procedure done at 5 yrs. of age at Mayo Clinic Rochester, Mn.

Hi All, My name is Lauren Trengove. I'm currently eighteen years of age and very keen to start a support group for Australian adults with Congenital Heart Defects. Please if you are an Aussie adult that fits the above description, I'd love to hear from you, and hope you will become a member of my web friendship group for CHD's when I have it up and running. This is a great site, loved it! Thanks for letting me be a visitor, Lauren :)

hi- my son keegan was diagnosed at 2 months with TGA, DORV, and a VSD. he has gone through one operation and is awaiting another. so far he is doing well and has begun to walk along furniture(which i had at one time wondered if i would ever see him do, thank God my prayers were answered!) i have just recently come across this site and think its great. our area doesnt seem to have much for support or resources and i would love to hear from anyone that knows the struggle. bless you all and take care!

I have a daughter Ellie born 10022000 with Tof not diagnosed untill 1 week later I am interested in talking to people who have gone through this. And comparing treatment abroad v uk

I have a daughter Ellie born 10022000 with Tof not diagnosed untill 1 week later I am interested in talking to people who have gone through this. And comparing treatment abroad v uk

I am 20 weeks pregnant and have discovered I have positive anti-ro antibodies. My babies heartbeat is 64. Probably has a heart block and may need a pacemaker once she is born. Has anybody experienced this??

What a great site! Our 3 year old son has had surgery at 1 week old for coarctation repair. He is doing fine now,he will need surgery again, but we are taking it one day at a time! Our prayers and thoughts are with you all! Feel free to e-mail us to share your story kpowell@gisco.net

What a great site! Our 3 year old son has had surgery at 1 week old for coarctation repair. He is doing fine now,he will need surgery again, but we are taking it one day at a time! Our prayers and thoughts are with you all! Feel free to e-mail us to share your story kpowell@gisco.net

My son died in January aged 2 days old. He was diagnosed of having right ventrival atresia and abnormal coronary arteries. Dean had a shunt operation when he was 1 1/2 days old, he came throught he operation well but unfortunately it was not meant to be. My husband and I did not know that there was anything wrong with Dean before his birth, so, it came as a bolt out of the blue as we have 3 very healthy daughters. We wold love to hear from anyone who has experiences with Deans condition and would dearly love o find out if they have gone on to have any more (healthy) children, as we are maybe considering trying again (once we have had the genetics tests done). I would just like to thank all the staff at the hospitals in Forth Park maternity, Kirkcaldy and the Sick Kids, Edinburgh for giving Dean the chance of life, as if it was not for their help and support Dean would not have lived for as long as he had. THANKYOU - WE LOVE YOU SON! Lots of love and kisses, Mummy and Daddy.

Tof Information required

Things sometimes get better. My son was born with Total Anomoulous Pulmonary Venous Return. We went thru a lot with him The memories are still awful- handing him to the life flight nurse to be taken to Phoenix Childrens Hospital, getting to the PICU to see all the doctors running to the cath lab as someone was coding, and finding out its my son. handing him again to the O.R. nurse-- signing the papers to allow him to be put on ECMO -pacers... more surgery due to constriction of the repair.. NG tubes-- gastro reflux, surgery to fix that.. lasix, digoxin, phenabarbatol,procardia etc etc the stares from people at the mall because you have a blue child on oxygen... jerky doctors-- friends who loose kids. BUT...sometimes they get better.. He currently is almost 10- only takes procardia- still has his pacer and still gets fed thru his button-- also in cub scouts, loves jumping on tramplines, fighting with siblings, playing with the dog, running, camping, swimming, horseback riding... recently hiked up stone mountain--- and most of all providing love and a smile to everyone. He loves life, and isnt afraid to show it... sometimes it does get better.

I am 14 years old and my dad has Mitral Valve regurgatation and he was going to have to have open heart surgery last summer but the day before he was supposed to have it they did another test and it showed that it wasn't bad enough to have surgery then and the weird thing is that the last time they did that test it was bad enough to have surgery. I was/am very glad he didn't have to it, but he probaly will have to later in life, but I believe that was a miracle and I am very thankful. God bless all.

Hi, I posted a few months ago, thanks for the responses! I am no longer going to need a pacer, Verpamil is working rather well on the SVT, and I couldn't be happier!

I'm a 12 year old boy Who had three heart surgeries and a pacemaker. I am looking for other kids with heart problems. I play baseball and soccer and am a boy scout.

Just a note to all not to give up the fight. I've survived nearly 35 years with Pseudo Truncus Arteriosus 4 (combine TOF/VSD/PA and you get the idea). I'm the second known survivor with this affliction. After 3 thoracotomies, dozens of caths and hundreds of therapeutic phlebotomies, I'm still kicking and a professional in medical research (not cardiac, though) and now starting my MD. PMA, a supportive family, love, laughter and faith will keep you here.

My 4 month old Sean was diagnosed at birth with a mild case of VSD. He is my first child and maybe my last. His cardiologist stated if I were to have a 2nd child the case of VSD would be more significant.

Our daughter is 18 years old and is starting college this June away from home. I never thought we would see this day. Tracey had a swiss cheese vsd (the whole lower chamber never formed) with a ventriculatomy. This is a very rare and difficult way to reach the defect by the only way it could be reached. She was 8 month of age and 12.5 pounds. We came thought GREAT! Tracey recieved her pacemaker as expected three years ago. She is doing wonderful thanks to the power of prayer that led us to the two most wonderful doctors in the country. Good luck to all of you and never give up hope. Jan

i enjoy your page it is very interesting, god bless you and your children and i admire all the parents that are going through this you are very special people!!!!!

I have a 12 year old son with Hypoplastic Left Heart Syndrome. He is doing GREAT!

Would like to connect with ohthers who have an older child with repaired TOF who has has stenting done with the left pulmonary artery. Repair was done at 10 mos. of age, stenting 2 yrs. ago and another stent due this summer. She has multiple problems-speech, learning and behavior. Possibly experienced a stroke at birth and/or during surgery. Would like to hear from others with similar situations-thanks.

My son who is currently 12 years old was born with hypo-plastic left heart.

I am looking for a pic of an unborn baby having surgery. The pic shows the baby holding the Dr.s finger. I belive it was taken in Europe. Thank you..

our son was diagnosed with atrio-venticular canal defect. he has had that repaired,and also had a pacemaker implanted; all done in 1994. he is now 12 years old and doing fine but we were told that he may need a valve replacement when he gets older. i`ve been biting my nails since 1994. can anyone send info about a-vcd, and valve replacement. my prayers are with you ALL!!!

This site has touched my heart. I am always so interested to read about other like myself. I am looking for imformation: I recently had my third heart surgury to remove another subaortic membrane and a aortic valve replacement. Upon follow up, my cardiologist discovered a pressure gradient of 55mm across my new valve. They admitted me into the hospital, did a little testing, and told me that they have no idea why I have this high gradient. I have non-stop, been researching this ever since. I am having a hard time believing that this problem won't damage my heart any further. And the doctors can't/won't tell me it's not. They don't know. As I'm sure you all know... "I don't Know" is NOT an answer any of us want to hear. If anyone at all has any info. on this, please email me! I wish you all the best of luck, you are all in my prayers! C. Mayhew

Our daughter Gina was born March 19,2000...at 2 days old she was diagnosed with a large AVSD. At 11 days old she was placed on digoxin and lasix for congestive heart failure. They want to perform open heart surgery at 4 mnths at Mt.Sinai in NY or St. Joseph's childrens hospital in Paterson, NJ. Hoping to find out more about this condition thru this webring.

My son was born with pulmonary atresia but was not diagnosed until he was 12 months old. They did not have much hope for him at first but 4 open hearts and 12 cathes later, he is doing great. The power of prayer is awesome. We have one of God's miracles living in our house. Without prayer, we could never had made it through this. He will have procedures the rest of his life, but we thank God everyday for what he has done for our son. God bless and good luck to all.

Hi! I am 28 yrs old, had BT shunt at 7 mos and corrective open heart at 5 yrs old for TOF. A few months ago I had to have a radio frequency catheter ablation for SVT. I am still having the SVT, and may need a pacemaker. Anyone out there been though this and have kids? I am scared to death to try to get pregnant after all this!

My sister is 24 weeks pregnant and "Hunter" has just been diagnosed with TGA. Any information or comments would be appreciated

My sister is 24 weeks pregnant and "Hunter" has just been diagnosed with TGA. Any information or comments would be appreciated

I apologize for repeating. The diagnosis should read double inlet single left ventricle.Thankyou.

I am 2o weeks into my pregnancy. My unborn child has just been diagnosed with double inlet left ventricle and will require surgery immediately after birth. Does anyone have any experience with this. thanks.