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tammy baker - st.john's,nfld (canada)
rodbaker75@myexcel.ca / http://

We have a healthy 8 year old son and then had another son 2 1/2 yrs ago diagnosed with pulmonary artresia, tetralogy of fallot and vsd at birth. He had a cortex shunt placed in his heart at 2 days old and then open heart surgery at 6 months old and they repaired the vsd and placed a conduit in his heart which will have to be replaced 2 to 3 times during his life as he out grows them. We had a rough year and a half but for the last year he has been a very active,healthy and happy child. His condition is called Digeorge Syndrome and is genetic, my husband and I both were tested and we were not carriers, it was just a fluke and has started with him as he will have a 50% chance of having a child with this condition. As we live in Newfoundland and there are no cardiac surgeons here for children we have to travel to Halifax, Nova Scotia for Adam's surgeries, he is followed in Nfld by a great cardiologist Dr.Shah who keeps a close eye on his condition. I would love to hear from other families affect by this or similar conditions.

Signed on: Tue May 15 20:58:25 EDT 2001

Nikki Jo - Northglenn Co, (USA)
dolfin1115@yahoo.com / http://

My name is Nikki Jo I am 24 years old and I was born with Severe TOF with Pulmonary Atersia, and DORV. I had 4 surgeries the latest one on January 23, 2001. Please feel free to email anytime.

We have our own support group here called the CHD Webring list, just send a blank message to chdwebring and you will be subscribed to our e-mail support group of parents just like you.take care,nikki jo with TOF/DORV/PA/Bradycardia

Signed on: Mon May 7 01:06:56 EDT 2001

Ricardo MadGello - Bellevue/WA (USA)
madgello@hotmail.com / Real Life Is Better!

Okay.I'm Here. So... Now Will You Marry Me? and your mom also cuz i need to help take care of her too. Shawnie LISTEN!I finally figured it out. I want you to have my baby. I want you to let me take care of your mother. END OF STORY! MadGello AND I'M NOT KIDDING!

Signed on: Sun May 6 22:26:13 EDT 2001

Jeannine - Stony Point, NY (USA)
jjcola@juno.com / ~Timothy's VSD~

We have two children, our daughter is 2 and our son is 8 months and has a fairly large VSD. We have been told to prepare for surgery although that isn't a definate decision at this time. Our little boy is so happy and loves to eat but has a fluid filled liver and rapid breathing. He is on all the medications at this point and really we just want what is best for him. The above web site really helped me to envision what this journey will be like for our little boy.

Signed on: Sun May 6 11:06:55 EDT 2001

Erin - North Carolina
erinfulk@iwon.com / http://

My 3 1/2 month old son just had surgery for a complete repair of TOF. I would love to hear from anyone who has gone through this surgery or is preparing to go through the surgery. We praise God for our son and the lessons we have already learned through him...

Signed on: Fri May 4 15:51:29 EDT 2001

Elie - NY (USA)
Campchic1983@aol.com / http://

hey... i am a girl 18 years old with CHD. if anyone is looking for someone for there children to talk to that has a heart condition let me know and i will try and set you up with friends of mine(or i could talk to them, ilove meeting others with CHD or AHD). Also i would like to let everyone out there know there are several camps around the USA which are strictly for kids with heart defects. If you would like to know more let me know. god bless- elie

Signed on: Fri May 4 09:57:53 EDT 2001

Laura - dallas t (USA)
smily4786@aol.com / I LOVE YOU!!!

hello! i am doing a project on birth defects and i just want too say taht this website has affected me more then just the a that i got on my project. I mean, i learned so much and realized how little people knowabout birth defects. this is a serious matter that needs to be taken care of! thank you so much for all that you web site has done! love, not hate, LOVE, gutie!!!

Signed on: Wed May 2 22:14:05 EDT 2001

pauline Livingstone - Belfast (Ireland)
livingstonepauline@hotmail.com / http://

The last time I was here was a few weeks ago and things looked grim ........now I am delighted to say my lttle nephew is doing great> he has just got out of hospital and is responding well to medication ......... he may need surgery in the future but that is ahead of us . Can i just say never give up hope , little kids sure have a way of surprising you, they are real battlers ..... Thanks be to God God bless you all

Signed on: Tue May 1 19:23:52 EDT 2001

Francine R - Windsor, Ontario (Canada)
feb_r@yahoo.com / Heart Defects Society of Windsor and Essex County

I'm a 27 year old CHDer, with "unusually complex congenital heart defects" as the cardiologists say. I am also one of the co-founding members of the Heart Defects Society of Windsor and Essex County. If anyone needs support and information (especially in the Windsor, Ontario area) feel free to email me!

Signed on: Sun Apr 29 20:49:47 EDT 2001

Janette Steele - Toledo Ohio (USA)
j4040s@msn.com / http://

I have a daughter with SVT and she is not growing out of it. If there is anyone who has been through surgery with SVT or know someone who has please write.

Signed on: Fri Apr 27 11:51:47 EDT 2001

Vilma - Turlock, CA (USA)
vilmacamp@yahoo.com / http://

I have an 18 year old daughter with HLHS, double outlet right ventricle, common valve who recently underwent the Fontan. This as her fourth surgery, and she is doing great. She participates in equestrian riding, vocal training and piano. She has a great attitude. We feel very blessed.

Signed on: Thu Apr 26 19:15:58 EDT 2001

lisa wilson - corona , ca (usa)
@webtv.net / my angele

god has blessed us all with special lil angeles that glow

Signed on: Thu Apr 26 02:36:52 EDT 2001

lisa wilson - corona,ca (usa)
@webtv.net / http://

hi im new here and was wondering if any has had a child born with a right sided dextrocarda?my son was born 3yrs ago with this disorder and has under went 2 open heart surgries. hes doing well and i hope good and all hes angeles will give him more gudince threw his life if any one here has a simular situation please fell free to write me

Signed on: Thu Apr 26 02:36:27 EDT 2001

lisa wilson - corona,ca (usa)
@webtv.net / http://

hi im new here and was wondering if any has had a child born with a right sided dextrocarda?my son was born 3yrs ago with this disorder and has under went 2 open heart surgries. hes doing well and i hope good and all hes angeles will give him more gudince threw his life if any one here has a simular situation please fell free to write me

Signed on: Thu Apr 26 02:13:52 EDT 2001

lisa wilson - corona , ca (usa)
@webtv.net / my angele

god has blessed us all with special lil angeles that glow

Signed on: Thu Apr 26 02:08:45 EDT 2001

mcginty - molly (usa)
mollymcginty@aol.com / Coarc. and bicuspid valve

My 2 year old son John had his coarctation of the aorta repaired last Wed. April 18, 2001. He is doing great! 24 hours after surgery he was in the play room playing with all the toys. He is currently taking blood pressure medicine until his kidneys regulate the new circulation of blood in his veins. He also has a bicuspid aortic valve which his dr. said may not need to be replaced until he is an adult or maybe never. We of course hope and pray that John will never need this valve replaced. Would like to hear from someone in similar situation. Thank you.

Signed on: Tue Apr 24 14:44:06 EDT 2001

Luz Swanson - Colo, IA (USA)
@dsluz@netins.net / http://

I had a baby girl(Nicole)she's about 4 months now. She was diagnose with Pulmonary Stenosis and PDA. When she's 3 days old they do the Angioplasty and two months after that she had her open heart surgery.God is so good for saving her life.

Signed on: Sun Apr 22 09:21:49 EDT 2001

Amy Van Buskirk - Searcy Arkansas (USA)
laavanb @arkansas.net / http://

my son was born in November 2000 with ASD, VSD, pulmonary and mitral stenosis, and hypoplastic left heart. He will have surgery soon. I would love to hear from other parents in this situation, as we aren't sure what to expect.

Signed on: Sat Apr 21 17:50:06 EDT 2001

Cheryl - Brisbane
clk72@one.net.au / Cheryl

Hi am 28 with CHD. I have Taussigbyng syndrome. To break thing down for everyone I have transposition of the great vessels of the heart (operated on in '81), Coarctation of the Aorta, VSD - a hole in the partition between the left & right ventricles, Pulmonary hypertension - oxygen depleted bloode, entres general circulation, poluthaemia - and increase in haemoglbin (extra red cells) and when I was 3 I had a mild stroke. Please contact me if you have any of these conditions or just want to chat about CHD.

Signed on: Fri Apr 20 22:26:35 EDT 2001

Paula Duffy - Nanuet, Ny (U.S.)
pl2lewis@aol.com / http://

I found out at 20weeks via ultrasound that my baby had complex heart defects. We were told to terminate, but we continued with the pregnancy. My son Skyler is 3mths old and the happiest baby you could ever meet- he smiles 24-7. He was born with DILV,Aortic Arch Interruption, ASD,2VSDs, TGA. He had his first surgery 2 days after birth and is awaiting his next surgery. We thank god everyday for our little miracle.

Signed on: Thu Apr 19 12:23:16 EDT 2001

jennifer - north carolina (usa)
@dahmen.wj@mindspring.com / http://

I am a 35 year old woman who had TOF surgery when I was six years old. I have had a full life and had not had many restrictions. I am a teacher and been able to work full time as well as have two children. I really enjoyed reading the entries, as I have not meet many people with my particular condition. When I went to my yearly heart check-up, the doctor inforrmed me that some people with my surgery were needing valve replacement surgery. I would like to know if anyone in my situation has any information on this. Thanks

Signed on: Wed Apr 18 23:12:40 EDT 2001

Burger -
@ / A Mother Who Cared

I know a person who just died at the age of 25 and she had congenital heart disease. The only reason she was alive that long was because she had a great mother who always look after her and treated her with respect and loved her a whole lot.

Signed on: Tue Apr 17 11:29:10 EDT 2001

brad - highland, ca (u.s)
@kooldude6@juno.com / http://

I'm a young adult(17, but soon to be 18, who's lived with a Congenital Heart Defect(Tetralogy of Fallout)

Signed on: Fri Apr 13 22:25:56 EDT 2001

Laura Marsh - Statesboro (GA)
lmarsh@frontiernet.net / http://

Our daughter is 17 months old today. She was diagnosed shortly after birth with pulmonic valvular and supravalvular stenosis and aortic valvular and supravalvular stenosis. At one week old, she underwent a balloon valvuloplasty (which failed) and immediate open heart surgery (which worked!) to complete a partial repair of her pulmonic valve.We are still monitoring her aortic stenosis every 4-6 months, but so far it is remaining "mild". Our daughter is the light of our lives and has SO much energy. You'd never know she has anything wrong with her by looking at her. She loves Barney, Fisher Price little people, dogs, horses and reading and is (finally) walking everywhere!If you've just found out your child has been diagnosed with similar defects, I hope this will give you lots of hope that these children can lead wonderful lives! May God continue to bless all of you and your special angels. We most assuredly have been VERY blessed.Feel free to write.

Signed on: Thu Apr 12 17:59:37 EDT 2001

Lady Irene -
@ / Lady Irene's Camelot

Finding this webring is terrific. I just signed the form to join. My son was born with Down Syndrome and CHD. Thanks so much for forming this group.

Signed on: Thu Apr 12 09:57:06 EDT 2001

Pam Moore -
AttMom4AOL.com@ / http://

This Webring has been a blessing to me. My son was born with tricuspid atresia in 1997. I would like to talk with other parents or anyone interested in this condition.

Signed on: Wed Apr 11 20:58:05 EDT 2001

Pauline Livingstone - Belfast (Ireland)
livingstonepauline@hotmail.com / http://

I have just found this page while trying to find more information about Epsteins anomaly . My 2 day old nephew has just been diagosed. Reading all your messages has given hope where there was none .Thank you and may all your prayers be answered.

Signed on: Tue Apr 10 16:41:23 EDT 2001

nicole blondell - martinsville, indiana (usa)
@bmb9398@yahoo.com / http://

my son is 9 mon and was born on June 22 with dorv,vsd,asd,pa,pda,mitral valve stensios, hypoplasrtic left ventrical, and hypoplastic coarction transverse aorta. We found out when he was 2 days old when he was sent to Riley childrens hospital. He had his first closed heart at 4 days old. His main artery coming out of the aorta, tore. We almost lost him. At 9 days old nate coded. The next day on July 5, 2000, nate went for his first open heart weighing 6lbs, they fixed his aorta. Nate had to go ecmo support, it did all the work for the heart and lungs. heart babies have only a 40% chance of coming of it, they gave nate none, he did in 5 days. Nate is known at Riley as Nate the Great. he has at least 3 more open hearts, one scheduled in august. he has also 2 cath done. nate got to go home for the first time in october, after being there for 3 and half months, he was on the vent for 2months. since june the only month we havent been here is janurary. if any one has any same heart defects or similar to nate email me at bmb9398@yahoo.com

Signed on: Fri Apr 6 17:18:53 EDT 2001

Jo Rawal - U.K
@ / http://

My 4 yr old son was born with CHD--TGA,ASD,PDA.He was diagnosed at 7 months and then followed 2 surgical procedures.The little fellow in question is doing real well and is loved by many even though he can be a bit of a rogue (maybe they gave him some cheekiness implants at the time of his surgery!) Hope that life is everything he hopes it'll be.april 5 2001

Signed on: Thu Apr 5 13:57:32 EDT 2001

jo rawal -
@ / http://

i have a 4 yr old son born with tga, asd ,pda which was diagnosed at age 7 months . the little guy in question is doing so well and is dearly loved by all who have had the pleasure to meet and greet him.

Signed on: Thu Apr 5 13:41:13 EDT 2001

jo rawal -
@ / http://

i have a 4 yr old son born with tga, asd ,pda which was diagnosed at age 7 months . the little guy in question is doing so well and is dearly loved by all who have had the pleasure to meet and greet him.

Signed on: Thu Apr 5 13:40:25 EDT 2001

jo rawal -
@ / http://

i have a 4 yr old son born with tga, asd ,pda which was diagnosed at age 7 months . the little guy in question is doing so well and is dearly loved by all who have had the pleasure to meet and greet him.

Signed on: Thu Apr 5 13:36:10 EDT 2001

Muhammad Shafiq - Lahore (Pkistan)
shafiq456@yahoo.com / http://

My son also have a uni-ventrical heart. It was discovered when he was five months old. He went under the operation for PA Banding on millioniom night. Now he is one and half year old. I wish health for all the kids who have heart diseases. May God keep them in the best of their helth. This is a good site, I am now hopeful that much research is going on in this field.

Signed on: Wed Apr 4 06:57:22 EDT 2001

Brandie Gallutia - Brentwood, Tennessee (USA)
zandersmamma@ivillage.com / Your one-stop shop to all things Gallutia

Our son was born with TGA on August 13, 2000. He had the arterial switch operation on August 17th & we took him home on August 23. He is the happiest child I have ever known & we are TRULY BLESSED to have such a good baby. I would really LOVE to hear how those of that were born with this heart defect are doing or those of you who have a child with TGA are doing & have there been any more problems? Thanks so much, Love to all...Brandie

Signed on: Mon Apr 2 12:53:38 EDT 2001

Mark Payne Smith - Geyserville (USA)
SimplyMark@hotmail.com / http://

In 1962 I had my first operation they took the artiey out of my right arm and placed it between my heart and lung, in 1968 I had my second operation were they performed open heart, I had a normal childhood and I did everything I wanted to, except playing football. 1980 I broke my neck in a car accident, and lived though it, now I'm 39, I smoked since I was 14, but along with it, I am now having problems with my heart, but I have worked hard all my life, and except for a few things My life was Great, I have a beautiful 12 year old daughter, Don't give up, I didn't. God Bless You All Love Mark Smith

Signed on: Mon Apr 2 02:05:37 EDT 2001

Cheryl - Brisbane (Australia)
clk72@powerup.com.au / adult CHD

Hi I am 28 with CHD. I have Taussigbyng Syndrome. To break things down for everyone I have transposition of the the great vessels of the heart (operated on in '81), Coarctation of the Aorta, VSD - a hole in the partition betweenb the left & right ventricles, Pulmonary hypertension - oxygen depleted bloode entres general circulation, polycythaemia - an increase hin haemoglbin (extra red cells) and when I was 3 I had a mild stroke. The drs are concerned I will have another stroke. Please contact me if you have any of these conditions or just want to chat about CHD.

Signed on: Fri Mar 30 01:16:39 EST 2001

Cheryl - Brisbane (Australaia)
clk72@powerup.com.au / Cheryl

Hi I am 28 with a rear congential heart disease (Taussig Byng Syndrome) I have a transpostion of the great vessels of the heart (operated on), coartation of the aorta, VSD a hole in the partition between the left and right ventricles, pulmonary hypertension oxygen depleted blood entres general circulation, polycythaemia an increase in haemoglobin (extra red cells). I had a mild stroke at 3 so the drs are concerned that I am have another one at anytime. I am pleased to say I am doing well and am interested in hearing from other patients with any of these conditions just to compare notes.

Signed on: Thu Mar 29 23:32:51 EST 2001

Kevin & Kelly Towns - Augusta GA (USA)
PraysforU@aol.com / Katlin Towns, our Angel

When we learned our baby had Hypo-plastic Left Heart syndrome, we immediately fell to our knees in prayer for the Lord to heal our baby. Yet, for reasons unknown to us, God saw it fit to take our little angel back for his own protection. We both miss her. I still love her and wish she could come back. I am just thankful that she no longer hurts.

Signed on: Mon Mar 26 14:59:18 EST 2001

Stacey H. - windsor (Canada)
@ / http://

My son Justin was diagnosed with coarctation of the aorta when he was 4 years old. He went to our pediatrician for his yearly check up and she told us that he had a murmur since birth and he had weakened femoral pulses, and had high blood pressure as well as he had been in the 25 percentile for his age and weight since birth. Well as you can imagine I was in shock, after all he was 4 years old and I knew nothing about the murmur of anything else. I could not understand why she didn't look into this long before as he didn't just have a murmur. When we saw th cardiologist for the first time, he told us that the surgery should have been done before he was 1. We were so upset that if only we had known maybe things would be different now. He is now 6 and will need a stent put in we are trying to hold off until his heart is adult size. Because the surgery was done so late his arch of his aorta is narrowed and when they did his surgery the narrowing was so long they could only take out the worst part and reanastamose the two still narrowed ends{the worst part they said didn't even develop}. He now is a very active little boy he swims and plays floor hockey. His appetite picked up after his surgery and his weight is now average.He is our little angel. Till this day I am still angry about every thing that happened. I feel as a parent I had the right to know every thing about my child and I wonder if his surgery was done when he was under 1 would he need a stent or any further surgeries. May God bless all of you andyou precious gifts.

Signed on: Mon Mar 26 03:47:07 EST 2001

Stacey Hedden -
@ / http://
Signed on: Mon Mar 26 03:19:31 EST 2001

Cort Stevens - Elgin IL (USA)
faithcubs_montecarlo5@juno.com /

I am a 27-yr-old male who has a conginetal heart defect and would love to meet people who have similar circumstances...to be able to talk to someone who understands.

Signed on: Sun Mar 25 20:47:56 EST 2001

corinne rosso - new jersey (usa)
@scott. rosso / http://
Signed on: Sat Mar 24 11:09:17 EST 2001

corinne rosso - new jersey (usa)
@scott .rosso / miricles

our daugter is seven monthes old and has pulmonary artresia . she had surgery at two days old and is waiting for her second out of three .we enjoy every day with her as you never know what is in store tomorrow and that is the same for heathy children.

Signed on: Sat Mar 24 10:32:05 EST 2001

Tara - California (USA)
Hoku1157@home.com / Me

Hi, Im fourteen years old, and have Tetralogy of Fallot with Pulmonary Artresia. I am doing a report on my heart defect, and was wondering if anybody can send me any info. Thanks!

Signed on: Thu Mar 22 22:20:22 EST 2001

Sonia Faienza - Woodbridge (Canada)
morena8s@aol.com / http://

I am 23 yr. old F born with TGA and VSD and D

Signed on: Sat Mar 17 07:03:39 EST 2001

Sonia Faienza - Woodbridge (Canada)
morena8s@aol.com / http://

I am a 23 yr-old F Congenital Cardiac patient...born with such problems as TGA, ASD, Tricuspid Valve Defect and Dextrocardia, just to name a few. I've had 5 open heart surgeries sine the ripe ol' age of 2 weeks old. The most recent procedure was a 14 hr. Arterial Switch. Supposedly, I'm told by the doctors @ T.G.H. that am the first adult to have this procedure done in Canada; (well, @ least in Ontario) in March '98. Unfortunately, the procedure weakened my heart due to the fact that I've had so many previos surgeries. Actually, the AS procedure is quite successful in children. Nevertheless, in Oct '98, I was placed on the transp. list and have been waiting for a heart ever since. If there is anyone who is pre or post transplant or with the similar conditions and dealing with such a life threatning illnes @ such a young age, please contact me...Perhaps we can help eachother and try to rediscover some small pleasurees in life while waiting or recovering. Please contact me...I'd love to hear from young adults, kids, parents, caregivers....anyone, really, who are familiar with these topics. All are welcome and please don't be shy...we can all help eachother and fight together!! Much love to the staff and mediacal caregivers @ Sick Kids and T.G.H., who have saved my life several times and surely impacted many others! Good luck to all who are recovering or waiting...like me!

Signed on: Sat Mar 17 06:57:40 EST 2001

Sonia Faienza - Woodbridge (CANADA)
morena 8s @ aol.com / http://

23 yr. old F with Congenital Cardiac conditions; have had 5 open hrt surgeries and have been waiting for heart transp. since Oct. '98. If it wasn't for Sick Kid's Hosp. in T.O., I would not be alive today...Keep up awesome work; informed minds can lead to life saving treatments. Parents, keep in charge...mine did and am alive also due to their constant love and support... Much love to all the sick kids... xoxo

Signed on: Sat Mar 17 06:16:06 EST 2001

Kate LaPlatney, 28 - MA (USA)
laplatney@msn.com / http://

I just stumbled on this site while surfing around. What a great idea! I was born with TGA, had surgery at birth, 18 mos., then got a pacemaker at age 21. I want to start a family in a year or so and I'd love to share stories with other TGA's.

Signed on: Fri Mar 16 23:37:08 EST 2001

becky cooper - leicester (uk)
cooper@sjbc.freeserve.co.uk / http://

my daughter was born with tricuspid atresia and pulmonary stenosis in feb. 1999. she is doining really well at the minute despite having "sats" of 68,i'd love to hear from other parents with similar conditions. she also was born with vacteral assosiation

Signed on: Fri Mar 16 13:59:21 EST 2001

anita aldous - kent (england)
anita.aldous@baring-asset.com / http://
Signed on: Wed Mar 14 11:30:29 EST 2001

Toni Kaufman - Pontiac (USA)
medcomp826 @aol.com / http://

My grandaughter was born with Epstein Abnomly and last year in Feb. she had her first open heart surgery to mend the vavle. it did not take. And now in 2 months she will have her second open heart surgery to replace the vavle. I would like to hear from someone who's child has had a vavle replacement and what to expect. Our whole family is very frighten and we would like to hear from someone else who knows what we are going threw. Thank-you

Signed on: Wed Mar 14 09:48:39 EST 2001

elizabeth inkley - lobethal (south australia)
besick@bigpond.com.au / http://

our baby(two tommorrow)was born with coarctation of the aorta but it was not picked up by the nurses as they ignored our concerns which would of given early detection he ended up with full body melt down except for his brain and heart and spent a week on life support before having his operation his coarctation was severe so he crashed fully at 3 days,has anyone elce had the problem that the nurses/doctors didnt listen?we nearly lost our baby because of this i suffer post traumatic stress panic attacts and im very protective of him yet his heart is good but he has so many other problems caused by late diagnoses.

Signed on: Tue Mar 13 03:20:40 EST 2001

Frank T McBride & Sharon McBride - Taylor, Pa (USA)
medic689@yahoo.com / http://

My son Kyle was born 10/18/92 with LHHS, he had all 3 surgeries. he was doing well but developed protein losing enterapathy. while undergoing a cardiac cath at age 6 he went into cardiac arrest, they said he was brain dead and i had to make the decision to take him off life support. to this day i suffer if i did the right thing, and wonder what went wrong? I need closure, I also need to speak to other families. and i have a ton of information on how to deal with LHHS, I know what it was like to lose a job , get evicted, lose your utilities. but i managed and found out how to prevent theses things. please email or write me ..thank you..

Signed on: Mon Mar 12 04:46:04 EST 2001

cam - newmarket (ontario)
@ / pulminary artresia

looking for others who have children born with no pulminary artery???

Signed on: Sun Mar 11 21:37:20 EST 2001

cam - newmarket (canada)
@kiltkerr@aol.com / http://
Signed on: Sat Mar 10 04:25:15 EST 2001

Samantha Elfers - Port Jeff Station, NY (USA)
elfmom@msn.com / http://

I am 28 weeks pregnant and my son has just been diagnosed with Pulminary Atresia. If you have been through this or know someone who has, please email me. I have listened to the doctors and read so much material, but there is nothing like talking to someone who know about it first hand. :)

Signed on: Fri Mar 9 09:39:28 EST 2001

Stephanie Franz - Pittsburgh, PA (USA)
ssfranz@msn.com / http://

I am twenty weeks pregnant and just found out that my son has tetrology of fallot with a puliminary artresia. i am very interested in talking with people in similar situations. My doctor has explained to me the procedures and what not, but I would rather hear from someone that has experienced it first hand. Please email me!!

Signed on: Thu Mar 8 13:07:46 EST 2001

JoAnne Granato - Howell, NJ (USA)
jag1659@aol.com / http://

I found this site from a Readers Digest article. I have a daughter with TOF. She had 2 surgeries at Deborah Heart & Lung Center in Browns Mills, NJ. This amazing hospital performs miracles, regardless of your ability to pay, if you have insurance or not. I would urge anyone with knowledge of someone who desperately needs heart surgery, but cannot pay, to contact this hospital.

Signed on: Mon Mar 5 14:13:34 EST 2001

doreen koerner - victoria,ks (usa)
/ http://
Signed on: Sun Mar 4 17:18:51 EST 2001

David Chicos - Dodge Center Minn (USA)
RoMiDa @aol.com @ / http://

My daughter has Hypoplastic left heart

Signed on: Fri Mar 2 21:29:35 EST 2001

tina sonefeld - east tawas michigan (usa)
kayleejo@famvid.com / http://

i signed in a couple days ago but put in the wrong email address the correct address is kayleejo@famvid.com

Signed on: Wed Feb 28 21:18:56 EST 2001

tina sonefeld - east tawas michigan (usa)
kayleejo@famvid.com / http://

i sign in the guest book a couple days ago and put the wrong email. the correct email is kayleejo@famvid.com thank you

Signed on: Wed Feb 28 20:59:53 EST 2001

Melinda Greco - New Cumberland, WV (USA)
chipnmel89@earthlink.net / http://

My son, Evan was born 11-24-94. Two days later diagnosed with HLHS. Evan has had all three of the staged Norwoods. Our little piece of heaven is doing great !! I have signed guestbook before, but we have a different e-mail address now. Anyone who needs to talk about HLHS or ask us any questions, please feel free to e-mail us. Evan is 6 now and doing great in kindergarten. Evan even plays on a tee-ball league (this will be his second year). God bless everyone on this website.

Signed on: Tue Feb 27 10:58:34 EST 2001

Melinda Greco - New Cumberland, WV (USA)
chipnmel89@earthlink.net / http://

My son, Evan was born 11-24-94. Two days later diagnosed with HLHS. Evan has had all three of the staged Norwoods. Our little piece of heaven is doing great !! I have signed guestbook before, but we have a different e-mail address now. Anyone who needs to talk about HLHS or ask us any questions, please feel free to e-mail us. Evan is 6 now and doing great in kindergarten. Evan even plays on a tee-ball league (this will be his second year). God bless everyone on this website.

Signed on: Tue Feb 27 10:55:57 EST 2001

tina sonefeld - east tawas michigan (usa)
kayleejo@familyvid.com / http://

we have a daughter that was born with hypoplastic left heart syndrome on aug.22 1996. she is doing wonderful , but we would like to talk to other parents with hplh and also join any web sites to help us keep updated and any new happenings with this heart defect.

Signed on: Mon Feb 26 15:47:27 EST 2001

Donna - Manorville, NY (USA)
djreidy@juno.com / http://

I was diagnosed with ASD in 1962 when I was 11 years old. I was very lucky as I had no symptoms. After a childhood bout with pneumonia doctors noticed something suspicious on my chest x-ray and further tests were done to confirm the ASD. I had surgery at St. Francis Hospital in Roslyn, NY in 1962. I am now 50 years old, have 2 grown children and a grandchild on the way! I just wanted tell everyone to not give up hope....medicine has come such a long way since in the last 39 years!

Signed on: Mon Feb 26 12:00:46 EST 2001

Donna - Manorville, NY (USA)
djreidy@juno.com / http://

I was diagnosed with ASD in 1962 when I was 11 years old. I was very lucky as I had no symptoms. After a childhood bout with pneumonia doctors noticed something suspicious on my chest x-ray and further tests were done to confirm the ASD. I had surgery at St. Francis Hospital in Roslyn, NY in 1962. I am now 50 years old, have 2 grown children and a grandchild on the way! I just wanted tell everyone to not give up hope....medicine has come such a long way since in the last 39 years!

Signed on: Mon Feb 26 12:00:21 EST 2001

Lance - Guelph Ont. (Canada)
lancegi@hotmail.com /

I'm the father of a very very happy 9 month old. He's scheduled to have corrective surgery for TOF a week from this Friday (March 2). He's our second child. (Our fist child is 4.5 years old and is in perfect health.) We were told our son would *not likely* need surgery. The doctor was confident the problem would heal itself. Later we were sent to another Hospital to have our son sedated for an ultrasound. They informed us right away that surgery was necessary. So now we wait for the date to arrive. In the meantime our son is having more trouble getting the required amounts of oxygen he needs. His lips turn blue (or a shade thereof) more often. The Doctors are very optomistic about the operation. (Mother and Father are terrified!). May our prayers be added to the multitude of others for all children and may all our prayers be answered.

Signed on: Wed Feb 21 17:18:00 EST 2001

cristina b. echavarria - laredo, texas (usa)
cristina@globaldispatch.com / http://

my best wishes to all parents and children of congenital heart diseases...my son rudy, died at 80 days old from complications of surgery for tga, vsd, asd andlater coarctation of the aorta..i pray all will be well..love, cristina

Signed on: Wed Feb 21 14:46:08 EST 2001

gayle n. peterson - ocean city md.21842 (u.s.a.)
ocgale@web.tv.net / http://
Signed on: Wed Feb 21 11:25:22 EST 2001

Jana Bowman - Douglasville, GA (USA)
@hellokitty435@yahoo.com / Inner Child Haven

My page offers free love blankets homemade to parents of babies (like mine) with heart disease. Thanks for your resources! great job.

Signed on: Tue Feb 20 23:21:48 EST 2001

Eleanor - NY,NY (USA)
@ / http://

My prays are with you and Cindy. She is truely adorable.Wishing nothing but good things for you and your family.Love, Eleanor

Signed on: Tue Feb 20 20:26:52 EST 2001

Mohammad Mostofi - Los angeles California (usa)
modental@hotmail.com / http://

May all of your wishes come true!!Love Shar & Mo

Signed on: Mon Feb 19 01:35:18 EST 2001

L. Spackman - Wichita, KS (USA)
Lisaspack@cs.com / http://

Hi. I am the mother of four and my second child was born with a large VSD. He underwent VSD repair at 18 months, but unfortunately there's been leaking right out of surgery. He turns 5 next week and will undergo his second VSD repair 3 weeks after his birthday. I welcome any other similar experiences to be shared.

Signed on: Mon Feb 19 01:30:31 EST 2001

Barbara DeCarlo - Downers Grove, IL (USA)
barbaradecarlo@hotmail.com / http://

Hi, I was just surfing around and found this site. I have a beautiful 6mo old boy with a VSD.

Signed on: Fri Feb 16 22:03:14 EST 2001

Diane Dahl - Drayton Valley (Canada)
metis888@hotmail.com / http://

first time at this site,i think its good! i'm a mother of 2 daughters who both hae had successful VSD repairs one of which also had PDA and coartation of the aorta

Signed on: Thu Feb 15 23:47:25 EST 2001

Susan Waters - Collingswood,NJ (USA)
sush2o@aol.com OR swaters@virtua.org / http://

Hi, I am a mother of 4 children. Two of my children were born with CHD. My son Stephen was born with Transposition of the Greater Arteries. He had two operations at Children's Hospital in Philadelphia in 1990 and is doing wonderfully. It was a very emotional rollercoaster to see my baby hooked up to all the machines. He is a wonderful healthy 11 year old boy with no restrictions. He sees a cardiolgist once a year at CHOP. My other son, Michael was born with Coarctation of the Aorta with a bicuspid aortic valve and was operated on when he was 18 months old in 1993. Unfortuntaley, within the last 2 years, Michael has developed high blood pressure and he now has left caroid stenosis. He had 2 stents put in him last year, but they did not stay in the right spot and had to be deployed in his descending aorta. I am interested in talking to anyone that has Coarctation of the Aorta. Feel free to e-mail me.

Signed on: Tue Feb 13 22:16:57 EST 2001

nancy lacy - waco, texas (usa)
lacywaco@aol.com / http://

my daughter elizabeth was born in 1997 with hyperplastic left heart. she underwent a gruling open heart surgery and lived 23 days before her kidneys failed. incredibly enough dr. fox repaired her heart only to have her body finally give out. i am very happy to hear those of you who have had success and i pray for those of us who did not. god bless us all.

Signed on: Sat Feb 10 18:21:14 EST 2001

Karen Avery - Seattle, WA (usa)
kavery@u.washington.edu / http://

My name is Karen, I was diagnosed with a 3rd degree complete AV block with slight murmer before i was born. honestly, i don't know much about the condition. i have lead a fairly normal life. I am 23 years old now and have a healthy and active toddler. i have been informed that it would be best if i had a pacer put in to help me keep up with my son,but i have mixed feelings and don't know where to look for advice. Any comments or questions are welcome...

Signed on: Sat Feb 10 06:03:57 EST 2001

melinda robbins - manvel,tx (usa)
rbbns440@cs.com / http://

my son was born aug 2000 with tricupid atresia, hypoplastic right ventricle, & transposition of the great vessels. he had open heart surgery at 9 days old and is now 6 months old. he will have his second open heart surgery in 1 week (feb 2001). he is a normal, healthy little boy whom i thank God for every day.

Signed on: Fri Feb 9 15:52:21 EST 2001

kimberly root - chicago, illinois (usa)
kim9973@aol.com / http://

hello! ihave a 14mo son named dylan, his diagnosis are hypoplastic right ventricle,tga,asd,vsd,double outlet lft ventricle. he had 2 surgeries so far a bt shunt at 5 days old and bidirectional glenn at 5 months he will most likely have a fontan within the next year he is doing extremely well i would love to hear from other parents.

Signed on: Fri Feb 9 13:12:55 EST 2001

SHILPI RAJ PANT - KATHMANDU (NEPAL)
pant@wlink.com / congenital heart disease

This is badluckily happened in my life.I'm 11 years old since my birth , I'm suffering with this disease having ASD PSD Ps etc, I/m ressidant of asian country, due to my family economical condition i'm helpless and after interest of my parents they are unable to treat my disease.they are worried about me and I feel always due to my cause my family is in pity so if possible please help them and give me new life. thank.

Signed on: Tue Feb 6 08:08:43 EST 2001

Myrna Harper - Titusville, Fl. (USA)
mdh2150@peoplepc.com / http://

I have been asked to participate in a research project. If anyone has or is in this program please e-mail me. The program is called biventricular pacing.

Signed on: Mon Feb 5 19:44:15 EST 2001

Carol-Ann Ossen - Sydney (Australia)
ossens@optusnet.com.au / http://

I am a 54 year old woman, who up until 3 years ago I lived my life with fallots tetrology. I was never allowed to do sport or exercise, but I did anyway. I married and adopted 2 children, my heart specialist, Sir Kempson Maddox, would not allow me to fall pregnant. I have lived a pretty normal life and in 1997 my Cardiologist, Dr John Richards of RPAH, recomended i have my repair done in the Seventh Day Adventist Hospital at Wharoonga by Dr Graham Nunn, a peadiatric surgeon. The operation was a success. I am a grandmother to 2 beautiful grand-daughters, who I see all the time & look after in the school holidays. Thanks to the wonderful Doctors who have looked after me so well over the years I have had a great life. I had 3 angiograms done over the years & repair was not advised as in the old days, success rate was very low, even in U.S.A. I just want to say to those parents out there with similar problems, not to give up hope, look at me!!!

Signed on: Mon Feb 5 03:43:16 EST 2001

Jennifer Jones - San Diego,CA (USA)
berryjones@aol.com / TGA

My son was born with TGA and had the arterial switch operation at 6days. He had no complication prior to or after surgery. He is 17mo and is the most active little boy I know. I really like this web site. Although, the Dr say he will lead a normal life they also say there is not much data on the Arterial Switch because its fairly new. I would love to hear from anyone who's child has had TGA. Feel free to email

Signed on: Mon Feb 5 00:51:32 EST 2001

Kimberly Bolt - TN (USA)
crbolt7@juno.com / http://

Great site! I have a 4 mo.old w/ a coarctation repair at 10 days old, and a large VSD. She also has a NG feeding tube. Feel free to email me crbolt7@juno.com

Signed on: Mon Feb 5 00:28:48 EST 2001

Jessica -
@ / http://

I was born with Dextracardia with Situs Inversus. I had surgery to repair the hole in my heart in 1983. I live a normal, healthy life. I just wish I knew more about this condition.

Signed on: Sun Feb 4 00:19:48 EST 2001

Lindsay Hartwell - University Place, WA (USA)
lindstar@hotmail.com / Welcome our baby

My son was born Jan 11, 2001 and was diagnosed with Ebsteins anomoly of the tricuspid valve at 19 days old. He may or may not need open heart surgery in 4 years. Even though the doctor is treating this as routine I still can't help to be sad for my son. I have a 4 year old that is perfectly healthy and it seems that my newborn was somehow cheated out of a chance for a normal life. I just hope the right person reads this and gives me the inspiration to be strong, because I'm just not feeling it yet.

Signed on: Thu Feb 1 02:37:00 EST 2001

corinne - hampshire (england)
cor55den@aol.com / http://

I have CHD,my two children also have it. I had surgery in 1984 aged 11,my sons were at 4 and 10 weeks old. I don't think anyone thought either of them would survive, but they have and if you saw them you would think they were 'normal'. I would love another baby but it is a big thing to go through again, especialy when family think you are wrong. I can never thank the cardiac unit enough, they support us even though I think, they think I'm mad! Anyone who needs a chat, please e-mail I'm not an expert but I do know how you feel.

Signed on: Wed Jan 31 11:59:54 EST 2001

ari athanasiou - holiday,fl (usa)
billy065@yahoo.com / http://
Signed on: Wed Jan 31 11:07:14 EST 2001

SFJ - (Britain)
@ / http://

Hi. I am the oldest of two girls and am 19. My baby sister died just a month or so after she was born of a massive heart defect. I was born three years before with partial AVSD and I was the lucky one. The doctors told my parents that I would be small, below average intelligence and generally not to expect too much of me. Ok, so I'm not tall, but I have achieved what I want in school/college (anything I haven't is only due to laziness!) - there is nothing that I am unable to do because of the partial AVSD I have. I have wonderful parents and friends, a wonderful boyfriend, and am determined to make a successful career of whatever I choose to do. No-one other than those I choose to make aware of it even realises that there is anything slightly different inside me to them. Although my sister didn't make it, I am leaving this message to prove that what you may be told about your child or self is not necessarily how it will be. Keep pushing, fighting and take whichever path you think is the right one. There will always be someone who does not turn out as predicted - make sure that's you.

Signed on: Tue Jan 30 08:39:24 EST 2001

heather collie - qld (australia)
whcollie@bigpond.com.au / http://www.geocities.com/HotSprings/spa/5652

My son Brendan was born 2 yrs and 6 mths ago,with CHD.His condition included Coarctation of Aorta,which was operated together with closure of PDA at 5 days of age.2 weeks later he had a Switch operation,due to his Double Outlet Right Ventricle,Transposition of the Great Arteries,VSD,and ASD.I'm glad to say he is doing very well,and we pray he won't require further surgery.Please don't ever give up hope,as our little miracles of heartchildren are true gifts from above.

Signed on: Tue Jan 30 07:59:58 EST 2001

Melissa M. Goetz - Haskins, Ohio (USA)
mel43551@hotmail.com / http://

I just had my daughter January 25, 2001 and she was diagnosed with TOF if there is any information or special information that anyone could possibly e-mail me I would appreciate it very much she is my world now and I can't bear to think of what could happen..Thank-you

Signed on: Mon Jan 29 14:16:52 EST 2001

Melanie - Moncton (canada)
meljared@hotmail.com / http://

hello, may name is melanie. My son was diagnosed with pulmonary artresia at birth. When he was 5 days old he had open heart surgery, correct the problem and he is doing wonderfull. I have questions in reqards to what type of testing I may have to undergo when i become pregant again. New to the site, first time on talking of my son's condition - I am not alone. thank you!

Signed on: Mon Jan 29 12:25:11 EST 2001

Peter Cawsey - Vancouver BC (Canada)
pcawsey@home.com / http://

I'm a 51 year old male who had coarctation surgery in 1954 when I was just six years old. I also have a bicuspid aortic valve. I am very lucky in that I have lived (and continue to live) an active life and still jog, play floor hockey once a week, ski, swim etc. I see a cardiologist every six months. I have elevated blood pressure and have taken medication at the same dose for thirty years. I'm interested in hearing from anyone with a similiar situation as I've never spoken to anyone else with corrected coarctation.

Signed on: Sun Jan 28 02:10:04 EST 2001

Ron Brown - Windsor, Ontario (Canada)
ronald_brown@gecdsb.on.ca / http://

My 8 year old daughter had a successful VSD repair when she was 9.5 months old. She is currently experiencing learning difficulties (reading, writing, math). Anyone else have a similar experience? Is there a correlation between LD and congenital heart defect? Your thoughts would be appreciated.

Signed on: Sat Jan 27 20:35:19 EST 2001

Diane - Issaquah, WA (USA)
dvogel2000@aol.com / http://

My 1 year old daughter was diagnosed with aortic stenosis at 2 weeks. She has had 2 cardiac catheters and will have open heart surgery to replace the valve (Ross procedure) within the next 6 months. Would love to hear from other families on what to expect.

Signed on: Sat Jan 27 16:59:02 EST 2001

Kayla Sitterly - NY (USA)
rsitterl@twcny.rr.com /

I am 11 years old and was born with TOF. I have had surgerys to repair the TOF. In the near future I will be having surgery to put in a pulminary valve. Naturally I am nervous. My parents and I would like to hear from other kids or parents in similar situations. Thanks!

Signed on: Sat Jan 27 10:29:32 EST 2001

Shelia Franklin - Groves, TX
Chdbaby@prodigy.net / http://

Requesting that everyone say little prayer for my Angel. Planning to undergo Open Heart Surgery for TOF on Feb. 20th. Something so major for my 7 month old son. Please

Signed on: Fri Jan 26 13:48:32 EST 2001

kevin higgins - houston texas (us)
@khiggins@lpcommercial.com / http://

my son Kyle was born december 29,2000. He has been diagnosed with complete heart block. I would love to hear from other parents that are dealing with this. Thanks!

Signed on: Wed Jan 24 16:37:46 EST 2001

S. Hannah Nesamani - Chennai, Tamil Nadu (INDIA)
hannah_n@vsnl.net / http://

We are to have an open-heart surgery for our daughter, in two days please pray with us. hannah hannah_n@vsnl.net

Signed on: Wed Jan 24 07:20:43 EST 2001

Grietinus Koops - Amersfoort (The Netherlands)
Grietinus.koops@klm.nl / (no title, my wife designs webpages)

I'm meanwhile 33 years old and was operated on a coarctation of the aorta when I was 10 years old. (In the early 70's it wasn't done earlier then... Now I'm a healthy grown up and have a good job at KLM Royal Dutch Airlines. Just wanted everybody to know thatlots of congenital heart diseases can be cured very well!

Signed on: Tue Jan 23 03:24:04 EST 2001

Maureen Street - Peoria, IL
maureen_street@hotmail.com / http://

I have a 2 1/2 year old son who is having his 2nd open heart surgery for Tetrology of Fallot, he had his 1st at 3 months. I am also 4 months pregnant. I would like to talk with with other parents of children or adults that have grown up with TOF so I know what to expect, and also learn of any parents that had another child after one with TOF etc.. and the 2nd child was fine. I am concerned. Any info or contact is greatly appreciated.

Signed on: Sat Jan 20 02:06:14 EST 2001

Adrienne Navarroli - Niagara Falls,NY (USA)
ANavarro@nfschools.net / http://

Hi - my daughter underwent surgery for truncus arteriosis at Boston Children's in November. She was six weeks old. Now, at three months, she is doing extremely well. Best wishes to all of you who have been dealing with this and/or similar defects.

Signed on: Fri Jan 19 14:43:27 EST 2001

wendy bosch - minot nd (usa)
wbosch@ndcourts.com / http://

Hi from another mother who has a child that was born with a coarctation of the aorta.

Signed on: Thu Jan 18 15:29:09 EST 2001

tester -
@ / http://

test

Signed on: Wed Jan 17 20:15:30 EST 2001