What a great site!!! My son, Tatum was born with an asd,vsd,and an av canal.
He received a P.A. band like Cindy and is waiting and waiting and
waiting for open heart when he is bigger and stronger like Cindy. He
is now 8 months old at 10pds.1oz.
Signed on: Mon Dec 28 01:12:26 EST 1998
My duaghter Taylor was diaganosed with vsd, asd, pulmonary valve stynisos,
no mitral valve, transpostsion of the great vessels at 1 day of
age, we knew nothing before hand. She has had an angioplasty, two caths, and
open heart surgery in June, she is do for another at two years of age which is
great news for thought it would be sooner, she is just shy of a year old and
doing excellant. thank the lord and all the prayers.... please fell free to
email me if your child has similar problems i'd love to hear from you
cjpaluch@bellatlantic.net
Signed on: Fri Dec 25 15:51:10 EST 1998
i am a 44 year old woman with a history of surgical correction of a
coarctation of the aorta at age nine. i have live a "normal" life although i
now have hypertension. i have been researching adults with congenital heart
disease. i like your site. Cindy is a beautiful little girl. happy
birthday mille. happy holiday season to all.
Signed on: Thu Dec 17 20:52:01 EST 1998
I am a TV producer looking for parents with children or adults with
congenital heart disease. We are hoping to produce a documentary series for
British television and would love to hear from people in the UK.
Signed on: Thu Dec 17 10:44:17 EST 1998
Our son Karl born 6 november 1996, had TGA,transpotion of the great ateries.
Open surgery twice, once at 17 days of age and now in august 1998. He is fine
today. We loved reading about Cindy, all luck to her in the future. Karl
loved hearing the melody at the homepage, he danced all around.
Signed on: Wed Dec 16 11:14:47 EST 1998
My daughter Kayla was diagnosed with TOF March 1992 at one month of age.
She had corrective surgery at 17 mo. and is doing remarkably well. She is
an active, healthy six year old with no complications. This site is great
inspiration to all who have dealt with these types of problems.
Signed on: Sun Dec 6 21:47:23 EST 1998
My son Liam was born at 28 weeks gestation with HRHS, tricuspid atresia, VSD
and ASD. He's had his B-T Shunt and Glenn Shunt completed, and is doing
great! It's nice to see how positive other heart parents/grandparents are,
and the optimism for our childrens' lives.
Signed on: Sat Dec 5 16:18:40 EST 1998
This is a wonderful site. I'm 16 years old with a VSD. I've never had surgery
to correct it. I was diagnosed one day after birth. Once again this
is a wonderful site.
Signed on: Thu Dec 3 18:37:46 EST 1998
Thank you for all of the valuable information of your web site.
I am using it to provide resources for other parents who have
children with CHD.
Signed on: Sat Nov 28 12:16:15 EST 1998
I am 48 years old. My VSD repair was done in 1961. I spent
twenty years in the military and have had no ill effects from either
the condition or the repair. After the surgery, weight gain and
energy levels went up immediately. I haven't stopped since.
Signed on: Wed Nov 25 08:06:20 EST 1998
Dear Shawnie, Thanks for such a wonderful site!
Signed on: Wed Nov 18 23:23:28 EST 1998
I have a son, Jeffrey, born 6/6/96 with HLHS.
In an effort to show there is hope for HLHS and
to help future parents our support network, LITTLE HEARTS,
takes group shots of kids with HLHS and sends them out
to Professionals and parents. The last picture had 17
kids ranging in age from 8mos to 11 1/2 years old. The
next get together with be 5/99. Anyone wanting pictures
or posters, please contact me. Thanks. Lenore
Signed on: Wed Nov 18 16:22:53 EST 1998
I am so happy I found this page. My son is 6 mo.
old and
diagnosed with TOF and day 2 of his life. It's nice
to know that my husband and the rest of my family are
not the only ones out there going through this tremendous
strain.Thank you Cindy and Mommy
Signed on: Tue Nov 10 13:23:19 EST 1998
I really enjoyed my time here, I have a daughter with
congenital heart disease, she was born with a interruption
of the aortic arch, VSD and ASD. Anybody who can help with
info on her future or has a child with simular problems,
please feel free to contact me.
Signed on: Mon Nov 9 16:43:27 EST 1998
I work in a welfare agency in Geelong Australia.
I am wanting information regarding "fallots tetrology".
Any help will be greatly appretiated.
Signed on: Sun Oct 25 21:32:35 EST 1998
Hi, first of all what a really nice page!!!
I'm a 29 yr old born with TOF had surgery at 3 yrs of
age and with the surgery the drs. wired me up in case
I need a pace-maker later in life... anyone have any
info.... please respond.... I also am looking for
info on TOF. Thank you!!!
Signed on: Fri Oct 23 23:14:13 EDT 1998
My name Amanda and I was born with a congential
heart diease call Tretalogy of Fallet, Im only 18
years old anda senior in highschool and last january
I had open heart surgery and Im glad to be here.
Signed on: Thu Oct 22 13:40:12 EDT 1998
You've gotta have a "good heart" to really appreciate trout
fishing !!!!!!
Signed on: Sun Oct 4 17:37:04 EDT 1998
I have a three year old, who was born with Aortic
Stenosis. It progressed to the point that he required
surgery at age two. At Vanderbilt University Medical
Center, they performed a heart catheterization and
aortic valvuloplasty. He was discharged home the next
day, and he has been doing well ever since. We still
anticipate more procedures in the future, but the
valvuloplasty has bought us more time, before open
heart surgey is necessary. I would welcome any
comments from anyone in a similar situation.
Lcrowder@ria.net
Signed on: Thu Oct 1 20:07:32 EDT 1998
We have a two month old baby girl who was
born with Tetrology of Fallot. She will be having
a corrective surgery within the next year and we
were hoping to be in contact with someone who has
or is going through the same. Thanks.
Signed on: Tue Sep 29 01:50:38 EDT 1998
My Grand-daughter Anna has had a succesful
operation
on her heart after being diagnosed with ebsteins
anomoly
Signed on: Mon Sep 21 19:15:02 EDT 1998
I was born with tetrology of fallot... I
had surgery in 1970 to correct it, im now 29
years old and happily pregnant, but scared...
anyone with this condition who has had children
please respond with your experiences!
Signed on: Sat Sep 19 11:56:19 EDT 1998
My son Jackson (born 9-30-97) currently 10 1/2
months old,
was born with D-TGA, Pulmonary atresia, Large VSD.
He has had Left BT Shunt at 6days old, Central Shunt
at 6
months old. Currently doing very well. We have
another pc visit on the 24th of Aug. Prognosis is
the Rastelli Procedure to correct defects somewhere
between ages of 2 to 5yrs old. I am finding very
little info on the Rastelli, if anyone knows where
I can get info I would be very grateful.
Sorry for the earlier message--I forgot to return.
Thanks and God Bless!
Sylvia, Jack and Jackson Howard
Signed on: Wed Aug 12 12:28:09 EDT 1998
I am 30 years old and have had a number of heart
operations when I was a child. Following a Holter test
this past week, I have been told that I need a pacemaker
ASAP. I have been able to find very little information
about pacemakers on the web. Can someone please write me
with information about them. I have a very active life
and enjoy mountain biking. I am very worried about the
life changes I have to make when I get the pacemaker.
The operations I had were: Ventricular septal defect
corrected at y ears o0ld, Coartation of the aorta at 4
weeks old, and closing the paten ductus at 4 weeks old.
I also have a minor mitral valve prolapse that was noted
at age 16.
I am open to asnwering questions about my heart if sent
via email: davidt1@ix.netcom.com
Again, send me you thougths on pacemakers. what are my
options for preventing a slow hear rate, other than not
sleeping?
Signed on: Tue Aug 11 21:56:48 EDT 1998
i have a daughter w/very complex defects,ToF,situs inversus,pulm.
atresia,atrio/ventricular discordance,major collateral arteries.I'm a computer
beginner but would like to talk someone with a case close to ours my e-mail:allisonp@erie.net.
Signed on: Sun Aug 9 18:55:55 EDT 1998
My daughter Olivia has tricuspid artreisa with HRH.Although she is doing very well
at this time I find limited info on her defect.Ihope I can find it here. Thanks
Signed on: Sat Jul 25 08:57:24 EDT 1998
My daughter Rylie was born 9/1/95 with a huge VSD. Had the surgery to repair it
at 6 mo., and still has a small hole from the stitching of the patch. She is still checked every
6 mo as her heart is still enlarged.
Signed on: Wed Jul 15 21:44:27 EDT 1998
I wish you and Cindy the best. As a mother to a heart baby, I know how difficult it can be.
Cherish each moment and hope for the best. God bless you!
Signed on: Mon Jun 29 23:17:58 EDT 1998
im 69 1/2 years of age with tetralogy of fallot never had a operation to fix defect.
Signed on: Sat Jun 27 22:08:20 EDT 1998
Our 5 y/o daughter was diagnosed with Anomalous Left Coronary at age of 2.
A Takeuchi Tunnel was used. Also has mital prolapse. In February we found a stenosis
in tunnel and significant leak in mital. Had second surgery in March. Doctor told us this week
there is another leak in mital. We're very frustrated! There is so little on her defect. Any info on
Anomalous Coronary would be great. Also anyone who could give us unsight on what to expect
with mitral problem would be appreciated.
Signed on: Thu Jun 25 23:40:03 EDT 1998
We have a daughter Elena 8mths old born with truncus arterious, asd, avsd, atrial issomerism.
and a club hand with a missing thumb possible holt oram syndrome. She has had PA banding
and is awaiting further surgery. Would like to hear from anyone in a like situation. Thankyou for a
informative page. Good luck Cindy
Signed on: Mon Jun 22 17:38:39 EDT 1998
What a wonderful page!! Good luck
with Mille.
Signed on: Wed Jun 3 13:11:57 EDT 1998
My son Conall was born with undiagnosed
Hypoplastic Left Heart. He was born on Jan. 7,1993
and died in my arms on Jan. 10,1993. My family misses
him every day. He is survived by a big brother
Hunter, and he has blessed us with two heart healthy
little sisters Anwyn and most recently Morrigan. We
will forever love and remember our precious little boy
and feel truly blessed to have had him in our home
with us.
Signed on: Fri May 22 01:32:52 EDT 1998
|
Name: Alison Miner Website: Adventure Angling Referred by: Word of Mouth From: Bedford, TX Time: 1998-04-21 07:01:40 Comments: Laurie, Your page looks great!! Keep me updated. See you the week of Memorial Day. Lots of love, Ali |
|
Name: Linda Hetherington Website: Referred by: Advertisment/Brochure From: Belfair, Washington Time: 1998-04-18 11:28:16 Comments: I seen a flyer in Dr. McCloskey's office at Mary Bridge Hospital in Tacoma, Wa. and was curious to see what info you had to offer. |
|
Name: Emily Elkins Website: n/a Referred by: Just Surfed On In From: Winchester, TN Time: 1998-04-16 09:32:58 Comments: When are the Heart parents going to chat again? Emily, Mom to 18 month old Sam, PA repaired at birth |
|
Name: Laurie Beard Website: Adventure Angling Referred by: NewsGroups From: Trinity, Texas Time: 1998-04-12 20:36:02 Comments: Great idea and great pages! Keep up the good work. |
|
Name: Kathy Website: Adventure Angling Referred by: Just Surfed On In From: Ontario Canada Time: 1998-04-12 20:12:12 Comments: ue |
|
Name: Liz Enos Website: Adventure Angling Referred by: Just Surfed On In From: NY Time: 1998-03-29 18:38:09 Comments: Our daughter was born with a coarctaion of the aorta and nearly died at 3weeks of age as she wasn't found to have the defect till she was in heart failure. She is now 6 years old and doing well. I enjoy reading up and keeping up with the new research,it also helps to know we are not alone. This was a great site....thanksAnyone with a child that has had a coarc repaired I welcome your comments,and conversation..........enos@eznet.net |
|
Name: Liz Enos Website: Adventure Angling Referred by: Just Surfed On In From: NY Time: 1998-03-29 18:22:25 Comments: This was a interesting site. My daughter was born with a coarctaion of the aorta and want to learn any and everything I can about it and other heart defects. I enjoyed your information. Thanks |
|
Name: Chrissy and Lance Crow Website: Adventure Angling Referred by: Just Surfed On In From: Clovis, CA Time: 1998-03-26 20:10:34 Comments: Just found the webring and think its great! We have a 4 y/o with ASD and who underwent PDA coil closure at UCSF at 22 mos old. The coil closure was successful and helped her ASD to grow together and avoided open heart surgery to close it. We consider her coil closure somewhat of a miracle beause her hole was a moderate size. I find the modern technology so amazing, and would love to hear from someone who has the same in common... |
|
Name: Tina Website: Adventure Angling Referred by: Just Surfed On In From: PA Time: 1998-03-23 13:41:47 Comments: I have a five year old little girl with a rare heart defect. We are not even sure yet where she will be having the surgery.I found this site by accident. I wish someone could help me with finding more information on this program. |
|
Name: Laurene Peltier Website: Adventure Angling Referred by: Just Surfed On In From: Seattle, Washington Time: 1998-03-17 12:52:51 Comments: I have four children, Ryan, Melissa, Samantha and Cheyenne. Ryan has AS and Cheyenne had an Arterial Switch performed when she was 8 days old. I It was a very hard time for our family. Trying to struggle with her in the hospital as well as taking care of the other kids. At this time we don't believe that Ryan will need any surgery. I don't know if I could handle another surgery. But, she is doing remarkably well and doesn't have to back to her PC for a year! What a relief! Thank you for you webpage. Laurene Peltier |
|
Name: HEATHER CROWELL Website: Adventure Angling Referred by: Just Surfed On In! From: AUSTIN, TEXAS Time: 1998-03-08 01:25:36 Comments: HI!My name is Heather Crowell from austin,tx.My husband and I are expecting a chd baby on mar.16th.Unfortunately we are both computer novices so any and all help would be appreciated!!! thank you |
|
Name: Lynne M. Tanghare Website: Adventure Angling Referred by: Just Surfed On In! From: ERMA, N.J. Time: 1998-03-04 01:00:16 Comments: My son was dianogsed with hypoplastic Left Heart Syndrome.I'm so glad I found this site! We're glad to know that we are not alone! He has already had his first surgery, and will be going back in May for the next procedure. |
|
Name: Paul-Eric Noordhoek Website: Adventure Angling Referred by: Net Search From: Netherlands Time: 1998-03-02 06:53:24 Comments: I have a Down's-syndrome son with a rather good corrected ASD and VSD. I am chairman of the national advisory committe for C.H.D. from the Dutch Heart Foundation. Also I am the leader/organiser of the yearly family-week that is being organised by the Dutch Heartfoundation. In this week 7 or 8 families are visiting the Hartenark (the congress- and holliday- center of the foundation) to have fun and to share experiences. I recently went to the European congres on Psycho-Social problems related to CHD in Swiss. This congress is hosted by the Association of European paediatric cardiologists. If you want to know anything about this, or the foundation or our activitys please feel free to send me a e-mail. Paul-Eric |
|
Name: Shabbir & Naznin Website: Adventure Angling Referred by: Just Surfed On In! From: Baroda, INDIA Time: 1998-03-01 13:30:38 Comments: Our Baby Boy, now 1 year old is having Tetrology of Fallots and is to be operated for total correction in May . We are afraid of the situation. Please advice. |
|
Name: Dara Glagola Website: Dolphin's Vast Ocean Referred by: Just Surfed On In! From: Richeyville, Pa. Time: 1998-02-26 22:13:37 Comments: I am also a parent of a complex congenital heart child!! I belong to the parent group, Heart to Heart, from Children's Hospital of Pittsburgh,Pa. If you have a newsletter, could you please put me on the list. Thanks |
|
Name: Joy Wetmore Website: Adventure Angling Referred by: NewsGroups From: Orlando,Florida Time: 1998-02-26 12:53:28 Comments: My son was born with Idiopathic Hypertrophic Subaortic Stenosis(a form of hypertrophic cardiomyopathy).He had open heart surgery on 2-6-98 to relive some of the pressure in the chamber and is now doing well. He is not cured by the surgery. He will have this for the rest of his life. I found this site through the PDHeart digest. I am intersted in the CHD pin and the CHD week if either or both of these things exist.If anyone knows pls. e-mail me jhw 22257@pegasus.cc.ucf.edu Or if you just need someone to listen. |
|
Name: Helen Prakelt Bishop Website: Adventure Angling Referred by: From LinkExchange From: Sacramento, CA Time: 1998-02-24 14:25:51 Comments: my daughter, Haley, age 9, has truncus arteriosus. I got your link from Green Bay's Kids With Heart Page. I am in "FamiliesWith Heart" based in Sacramento, CA. I am listed on Sheri Berger's support group page. |
|
Name: Laura Wright Website: G&W Last Frontier Referred by: Just Surfed On In! From: Dripping Springs, Texas Time: 1998-02-12 19:57:12 Comments: I am glad to have found this web site. I am a post-tetralogy of fallot patient. I am 39 yrs. old and I had my corrective surgery when I was 9 years old at Children's Medical Center in Dallas, Texas. |
|
Name: Chad and Melanie Stanford Website: Adventure Angling Referred by: Word of Mouth From: Tupelo, MS Time: 1998-02-10 15:35:41 Comments: Chase was born May 19,1997 and shortly after birth was diagnosed with Hypoplastic Left Heart Syndrome. As of now, he is 8 1/2 mos. old and 6 months post Hemi-Fontan. He has had many, many complications along the way, but he has bravely overcome most of them. Developmentally, he seems to be doing most things that a healthy child his age does. He is truly my Super Hero! Chad and I also have a 3 yr. old daughter, Hope who is heart healthy and very much a typical 3 yr. old. We thank God every day for our 2 precious children and the miracles we have witnessed. |
|
Name: Elizabeth Oblea Website: Adventure Angling Referred by: Net Search From: Redwood City, CA Time: 1998-02-10 12:48:42 Comments: I'm intrested in learning and supporting groups like these, my younger brother was diagnosed with this three days after birth |
|
Name: Sandi Welsh Website: Adventure Angling Referred by: Advertisment/Brochure From: Middlebury,CT Time: 1998-02-09 22:14:28 Comments: I wish this was available 15 years ago! |
|
Name: Monica (mom of Pol) Website: Adventure Angling Referred by: NewsGroups From: Barcelona-Spain Time: 1998-02-06 16:53:54 Comments: You have a precious girl!! My son Pol (15 months old) is affected by TOF. Best whishes for Cindy. |
|
Name: annie Website: Adventure Angling Referred by: Just Surfed On In! From: ny Time: 1998-02-03 07:36:41 Comments: my daughter had surgery for anomolous left coranary artery 9 years ago has mitral insuffenciency ,chf some stenosing would like some information..unable to find her diagnosis thanks..surfing and found this |
|
Name: annie miller Website: Adventure Angling Referred by: Just Surfed On In! From: Maryland Time: 1998-01-26 20:38:59 Comments: Hi! I am a 19 year old female who has tetrology of fallot. It was corrected with open heart surgery when i was five. I am just doing research on it anyone with information please email me. Thank you ! Annie |
|
Name: Kim WAlters Website: Adventure Angling Referred by: Just Surfed On In! From: California Time: 1998-01-26 18:08:28 Comments: I have a 2 year old with ASD about to undergo surgery what should we expect! |
|
Name: Jesse and Sherry James Website: Adventure Anglingnone Referred by: Just Surfed On In! From: Gastonia, NC Time: 1998-01-23 13:44:08 Comments: Our son Richard (16 months) was born with an Interrupted Aortic Arch, ASD,VSD and a recurring Coarctation all repaired. Richard also has a Misalignment of the ventricle wall, Horners Syndrome and Hydrocephalus(unrelated to CHD). He has had Reconstructive heart surgery at 4 days, open heart surgery at 4 weeks, brain surgery at 7 1/2 weeks for a shunt placement. Angioplasty at both 4 and 8 months. He is now a beautiful little boy. We give our Lord Jesus Christ all the glory for this wonderful miracle! We also have two older children Jesse Lee(8yr. boy) Grace (5yr.) Please email us back if possible. God Bless all our heart babies!!! |
|
Name: J.L AND G.M Finch Website: Adventure Angling Referred by: Just Surfed On In! From: New Zealand Time: 1998-01-17 02:19:02 Comments: good site didnt have time to have a proper look will come again look foward to hearing from you. |
|
Name: Lenore Marsh Website: Adventure Angling Referred by: Net Search From: Manassas, VA Time: 1998-01-16 12:11:43 Comments: I'll figure out your site eventually! There are so many more CHD sites "nowadays". When I first started researching my son's CHD, I was pretty hard-pressed to find anything on the net that I could relate to. I do have a favorite: www.tchin.org. I don't know if you have a link to that one yet...I just got here. Short intro: My son, now 4YO, had his ASD repaired at 2.5YO. We live in Manassas, VA and went to Children's National Medical Center. My son is doing wonderfully, heart-wise. Of course, there are the trials and tribulations of simply being a 4YO! I also have a 6YO son, a tank full of fish, a 2 month old puppy and a husband... you could say I'm pretty busy!!! (And, yes...I work full-time; my hubby and I work "in shifts".) |
|
Name: Linda Russo Website: Adventure Angling Referred by: Just Surfed On In! From: Chaska Minnesota Time: 1998-01-15 18:17:20 Comments: I am the mother of a 10 year old boy who has undergone 5 heart surgeries for interruption of the aortic arch. He is currently doing well with clear sailing after a very rough first five years. I've been surfing for information on the "Heart of the Child Foundation." Any leads? |
|
Name: Tony and Daisy Cornelius Website: Adventure Angling Referred by: Just Surfed On In! From: Augusta, Ga. Time: 1998-01-13 18:51:11 Comments: Hello!I'm so glad to have found a support network for children with heart defects--We have felt so isolated here in our community. Our son Adam was born with several heart defects which has left him on a respirator at home. He was born with a large VSD, an interrupted aortic arch and aortic stenosis near the left mitral valve. He has had several heart surgeries from the third day of his life to 3 months. |
|
Name: Sharlyn Kerigan Website: Adventure Angling Referred by: From Geocities From: Lewisville, NC Time: 1998-01-08 03:50:11 Comments: Yesterday a sonogram revealed that my daughter (due date 3/11/97) has Hypoplastic Left Heart Syndrome. I know how critical it is and I am looking for information and others to talk to. |
|
Name: April Still Website: Adventure Angling Referred by: Net Search From: West Monroe, LA Time: 1998-01-08 00:19:52 Comments: I have a 3 yr. old daughter with congenital heart disease. She has interrupted aortic arch, large VSD, ASD, bicuspid aortic valve, aortic stenosis, enlarged heart, and is congestive heart failure. She has had a total of 5 surgeries since she was five days old, three of which were open heart. She will require more surgeries in the future. God Bless all of you out there with these special little angels. Please feel free to email me if you would like to chat. AStill3@aol.com |
|
Name: Sarah Betts Website: Haven't done one yet Referred by: Just Surfed On In! From: London UK Time: 1998-01-07 19:15:28 Comments: I was looking to see if anyone here has had a child with complete congenital heart block caused by anti-ro anti bodies.....My daughter was born with this in March 96 and had a double epicardial pacemaker fitted. It didn't work and sadly she died at eight months from heart failure and RSV needing a transplant. I would be interested to know if anyone has had a child with a similar problem and what happened?? |
|
Name: Isaiah Matthew Harris Website: none Referred by: Just Surfed On In! From: Bridgeton. Missouri Time: 1997-12-30 19:45:28 Comments: I am 13 years old. I have pulmonary atresia with VSD and a couple of other heart defects.I have had one surgery at the age of 1 year. I have become frustrated because some of my classmates have made fun of me because of my physicsl limitations. Extreme heat or cold conditions are very difficult for me to handle, and my lung capacity does interfere with my physical activities. I have been quite well except for an incidence of pericarditis a year and a half ago. God takes care of me, and I know I'll be OK. Is there anyone out there with a problem similar to mine? |
|
Name: Connie Moldrup Website: Adventure Angling Referred by: Just Surfed On In! From: Carbon,Alberta,Canada Time: 1997-12-27 22:06:08 Comments: Have 3 sons of which one of the 5 year old twins was born with tetraology of fallot. He has had 9 surgeries in the past 5 years but so far has beaten all odds and is a healthy happy boy. Will know more about his condition after surgery year ago when we go for a complete workup in feb. |
|
Name: Kimberly S. Bonham Website: Adventure AnglingDon't Have One Referred by: Just Surfed On In! From: Fountain Valley, California Time: 1997-12-24 18:30:56 Comments: Kimberly S. Bonham mother to Heather Mae Bonham ( Tetrology of Fallot, S/P Pulmonary Valve Implant and Pacemaker Inplant). Would like to get information concerning all. I am very happy to know that there are places for us CHD parents and CHD Adults. You people are doing a great job, keep it up.Merry Christmas and Happy New Year from the Bonham Family. |
|
Name: Janet Website: Referred by: NewsGroups From: Massachusetts Time: 1997-12-24 02:24:02 Comments: My son is a 5 1/2 year twin. He has transposition of the great arteries, pulmonary atresia, and complete av canal. He Also has CHARGE Syndrome which includes both vision and hearing impairments, retarded growth and development, and other less serious issues. Justin is doing very well and is attending a special needs kindergarten class. His heart condition, although not currently an issue, is the my biggest concern. The surgery they have done is paliative, meaning (as you probably know) they have not corrected the problems, only relieved the problems caused by the defect. I worry constanly about his future. |
|
Name: Robin Website: Adventure Angling Referred by: Just Surfed On In! From: mississippi Time: 1997-12-16 20:17:50 Comments: I have a six month old baby boy who was born with multiple heart defects. He has already had one heart surgery and has to have two more before the age of two years. The surgery is called the Norwood. The two top defects are Tricuspid atresia and Transposition of the aortia and the pulmonary arteries. I am looking for information on this. Thank you. |
|
Name: Carolyn Keefe Website: Adventure Angling Referred by: Just Surfed On In! From: Gander,Newfoundland, Canada Time: 1997-12-15 20:10:03 Comments: I have a two year old daughter with complex congenital heart defects. Any sites that give me information on these defects or put me in touch with other parents are just great! |
|
Name: amy baker Website: Adventure Angling Referred by: Just Surfed On In! From: mankato minnesota Time: 1997-12-15 06:04:10 Comments: son was diagnosed with t of t when he was 4 wks old.. had 2 surgerys and hope there are no more to come.. |
|
Name: Jackie Jacobs Website: Adventure Angling Referred by: Just Surfed On In! From: London, UK Time: 1997-12-14 00:29:01 Comments: My husband has been disagnosied has having anomolous pulmonary venous connection problem. Appars it is a congenital problem he has had since birth - he is now 65 and this is the first time he has had trouble with his heart. We have been told he will need an operation very soon, but want to know a little more about it before discussing the details with the surgeon. Anyone have any knowledge of this condition and the operation required to correct it in an adult. We understand that normally this condition is detected in children and successfully operated on at an early age. Unusual to get to 65 without any previous problems. Thanks for any help. |
|
Name: Greg Grummett Website: Grummett Referred by: NewsGroups From: Brantford, Ontario, Canada Time: 1997-12-12 17:13:00 Comments: My daughter has a congenital heart defect. Double inlet left ventricle with transposition of Great Arteries so I am always looking for information relavent to her condition. |
|
Name: Christina M. Stockton Website: Adventure Anglingdon't have one Referred by: Just Surfed On In! From: Time: 1997-12-11 13:23:00 Comments: I will give birth to a son with HLHS in March. Right now my biggest worry (OK, maybe not the biggest) is how to insure that the place where my son has surgery is selected for their experience and not for their nearness to my home or their participation in my HMO. I'm not rich, and I don't have time or energy to start running bake sales, but I do want to give my little john the best chance I can. All advice (and prayers) will be welcomed. Chris |
|
Name: Michele and Michael Warren Website: Adventure Angling Referred by: Word of Mouth From: Eastern North Carolina Time: 1997-12-05 21:41:00 Comments: We have an 11 mo.old Hypoplastic Left Heart Syndrome son who is post Norwood 1-9-97, post Hemi-Fontan 6-5-97, who received care at Children's in Philadelphia. He's doing fantastic..25 lbs!! We would love to talk with other HLHS parents. Heard about this site, and finally found it. God bless all of the special hearts out there..and their parents. Feel free to E-mail us at MWarren962@AOL.com. We'd love to hear from you, as well as share with you our story. |
|
Name: Shirley Jordison Website: Adventure Angling Referred by: Just Surfed On In! From: Time: 1997-12-05 18:14:00 Comments: Just discovered this page - have an interest in congenital heart disorders as we had a daughter with transposition of the great arteries. |
|
Name: Savita Dandapani Website: Savita's Homepage Referred by: Net Search From: Colorado Springs, CO Time: 1997-11-30 04:17:00 Comments: Hi, I found this page doing a search for congenital heart disease. I am writing a paper on this disease for a class at harvard med. and wanted to know more about the clinical, personal aspect of this disease! thanks for sharing your experiences! :-) |
|
Name: KURT STIGELMAN Website: Adventure Angling Referred by: Net Search From: Mass. Time: 1997-11-27 05:02:00 Comments: My wife and I are expecting; at 22 weeks, and have a diagnosis of HLHS,so we are searching for all info to help us decide our baby's future.Maybe your page will help us-thanks. |
|
Name: Stuart Shilitz Website: Adventure Angling Referred by: Just Surfed On In! From: New York -westchester county Time: 1997-11-18 03:49:00 Comments: Our son daniel max has had two procedures to correct several problems- the doctors and surgery was done at Columbia Presbreterian in NYC--we are very fortunate- Daniel is doing well today -he is an amazing 5 year old- look forward to learning more--Im Stu my wife is Dina djshilitz@pcrealm.net |
|
Name: Paula Ridder Website: Adventure Angling Referred by: Net Search From: New Creek, West Virginia Time: 1997-11-11 04:29:00 Comments: Our baby, Abi, was born in 1989 with Truncus Arteriosis. She did not survive the surgical attempt to repair the defect. I only wish an internet search and support site had been available then. Does anyone know of current research and/or techniques that are now available? God bless all the parents who need to find this site, and you for creating this web ring. |
|
Name: Patricia J. Abellana Website: Adventure Angling Referred by: Just Surfed On In! From: Pacifica, CA Time: 1997-11-06 03:00:00 Comments: My daughter, Justine is 6 yrs old and has rt ventricular hypertrophy. She is doing well, minimal medication (digoxin, aspirin, Lotensin (high blood pressure med). We were recently told that somewhere in the 2nd decade of her life she will need a heart transplant. There are some signs already of a failing Glenn and some leakage with the fontan. She had a BT shunt at 2 days, Glenn shunt at 16 months and finally a fontan at 2 1/2 years. Is there any info for me out there on her condition as I know it (single ventricle, TGA). I feel very uninformed at times. Thank you, |
|
Name: Adele Schober Website: Adventure Angling Referred by: Just Surfed On In! From: Australia Time: 1997-10-27 01:11:00 Comments: My Daughter Gabrielle(5)has an atrioventricular canal defect. She is doing very well at the moment but will need a valve replacement sometime in the next few years. I would like to hear from anyone whose child is a little older or has had a mechanical mitral valve inserted. |
|
Name: LORENE RASTED Website: Adventure Angling Referred by: Just Surfed On In! From: LANDERS C.A. Time: 1997-10-21 18:44:00 Comments: I HAVE A SON GEORGE 12YRS OLD BORN WITH TRANSPOSITION OF THE GREAT VESSELS HE HAD A SENNING OPERATION WHEN HE WAS 14MONTHS OLD I THOUGHT EVERYTHING WAS GOING GREAT WELL HIS DOCTOR JUST TOLD US HIS HEART IS NOT WORKING AS WELL AS HE WOULD LIKE IT TO GEORGE WILLBE HAVING A HEART CATHETERIZATION IN NOVEMBER TO SEE IF THERE IS SOMETHING THEY CAN DO TO HELP HIM OUT HE ALSO HAS A.D.H.D. AND DEPRESSION WOULD LIKE TO HEAR FROM OTHER PARENTS WHO ARE DEALING WITH T.G.V AND OR MENTAL HEALTH ISSUES |
|
Name: Jessica Vaden Website: we have none yet Referred by: Just Surfed On In! From: Ceres, CA Time: 1997-10-16 23:29:00 Comments: I was born with TOF and had corrective surgery on 10-10-97. I came home on 10-13-97. My surgery was a great success. I am 12 years old. Please write back. Thanks Jessica |
|
Name: Jessica Vaden Website: Adventure Anglingwe have none yet Referred by: Just Surfed On In! From: Ceres, CA Time: 1997-10-16 23:25:00 Comments: I was born with TOF and had corrective surgery on 10-10-97. I came home on 10-13-97. My surgery was a great success. I am 12 years old. Please write back. Thanks Jessica |
|
Name: Nancy Tate Website: memorial Referred by: Just Surfed On In! From: Iowa Time: 1997-10-10 06:04:00 Comments: help!! I need to contact the web mistress to let her know that the code has been added to http://members.aol.com/NanT8. How do I do this???? |
|
Name: Nancy Tate Website: Memorial to Thomas R Doggett Referred by: Just Surfed On In! From: Iowa Time: 1997-10-10 03:47:00 Comments: Thank you for welcoming me to your ring. I hope my site is worthy of the rest that are here. |
|
Name: TERRI HOEKSTRA Website: Adventure Angling Referred by: Just Surfed On In! From: NASHVILLE Time: 1997-10-09 09:34:00 Comments: HEY, I HAVE A PATIENT WITH TRANSPOSITION OF THE GREAT VESSELS AND I'M JUST LOOKING UP INFO. I NEED A BETTER UNDERSTANDING OF TYPE L. |
|
Name: Patrice Alexander Website: Adventure Angling Referred by: Just Surfed On In! From: new jersey Time: 1997-10-07 14:31:00 Comments: My daughter, Anna, is almost 3 months old and already has had corrective surgery for TGA, VSD and coarctation of the aortic arch. This has been my first opportunity to explore the net for information and I must say I am both suprised and impressed with the information available. After many ups and downs on the recovery rollercoaster, I am happy to say she is recovering nicely and I hope I will soon be able to share my experience with other parents. |
| Name: Jennifer Nelson Gordon Website: First Presbyterian Church homepage Referred by: Just Surfed On In! From: Selma, Alabama Time: 1997-10-06 14:34:00 Comments: Thanks for the information that you sent to me. You are very speedy. I haven't had time to read over it but hope to find time during the morning. Please send me any more info. that you may find on this malformation. May God bless you! Jennifer |
|
Name: Robyn Website: Robyn's CFIDS/CFS/ME (and NMH) Pages Referred by: From Geocities From: Florida Time: 1997-10-05 05:46:00 Comments: Thank you for signing my guestbook!! You have a really great site!! Please stop by My CFIDS/CFS/ME Page again soon... ![[CFIDS Banner]](http://www.geocities.com/HotSprings/1922/newgeoban.gif) |
|
Name: Kathy & Greg Galanos Website: Adventure Angling Referred by: Just Surfed On In! From: Wasilla, AK (formerly of NJ) Time: 1997-09-28 09:55:00 Comments: Our son John was born 6/14/91 with several CHD's. He had the Norwood @ 5 days old, and after many complications, finally had the the fenestrated fontan in 1995. He has made remarkable progress, and I would look forward to talking with other parents of children who have gone through the 3 procedures, or are in the process of going through them. Kathy |
|
Name: Jino Lee Website: Adventure Angling Referred by: Just Surfed On In! From: Penang, Malaysia. Time: 1997-09-18 14:42:00 Comments: I have a mitral valve prolapse (in the 4th chamber) and now I'm very weak. Climb four storeys and I'll have a palpitation, couldn't breathe. Very often suffocate while I'm sleeping. Yet the doctors said it's only a small matter, not harmful ?! But I don't think so. Can someone please help me, my e-mail: dhitman@rocketmail.com Thanks. |
|
Name: Sylvia Crawford Website: Adventure Angling Referred by: From Geocities From: Reno, Nevada Time: 1997-08-30 22:30:00 Comments: My daughter, Sari 4 years old, SV and TGA, uni-directional Glenn at 3 months, BT shunt. |
|
Name: Libby Hamilton Website: Adventure Angling Referred by: Word of Mouth From: Fort Worth, Texas Time: 1997-08-28 21:40:00 Comments: This is great. As soon as I can find the time to get a webpage together I'll let you know. |
|
Name: Edie Spears Website: Adventure Angling Referred by: Word of Mouth From: Salem, Oregon Time: 1997-08-27 11:01:00 Comments: My son Michael was born with hypoplastic left heart syndrome on Nov. 26 1996. he has had the norwood & glenn and will be having the fontan next summer. He has had a lot of complications but is doing extremely well now!! Anyone interested in sharing or getting info or support email me hlhsmom@aol.com. |
|
Name: Christine Ferraris Website: Adventure Angling Referred by: Just Surfed On In! From: Vacaville Time: 1997-08-25 21:16:00 Comments: This is so special! |
|
Name: Jasmina Henderson-Rauter Website: Adventure Angling Referred by: NewsGroups From: New Zealand (org.SLOVENIA) Time: 1997-08-23 10:08:00 Comments: We have a child, born on 18 of September 1994, who was born with TGA. His name is Tjas and he is doing very well. My husbands name is Darren and mine Jasmina, we have also en older son name Mikey, , born on 26 of February 1992. If any one wants to know anything about us, please e-mail us. Love Jasmina, Darren, Mikey and Tjas |
|
Name: SplHtMom/Lisa Veronin Website: Adventure Angling Referred by: Word of Mouth From: pdheart Time: 1997-08-23 08:26:00 Comments: Dear Shawnie, We finally made it over here and it now on my favorites list! See you soon on PD-heart |
|
Name: Anne Mossey Website: Adventure Angling Referred by: Just Surfed On In! From: Milton, Vermont Time: 1997-08-23 02:08:00 Comments: My daughter has truncus arterious and would like to write to other parents of Truncus children. My daughter is almost thirteen years old and has had a hard time since birth. E-mail me and we can chat. |
|
Name: Anne Mossey Website: Adventure Angling Referred by: Just Surfed On In! From: Milton, Vermont Time: 1997-08-23 14:02:00 Comments: My daughter has truncus arterious and would like to write to other parents of Truncus children. My daughter is almost thirteen years old and has had a hard time since birth. E-mail me and we can chat. |
|
Name: Rick Website: House of Nut Referred by: Word of Mouth From: Ontario, Canada Time: 1997-08-20 06:46:00 Comments: A fantastic site!! Having CHD myself, I was looking for a place like this were I canget information and also join a web ring that delt with various CHD. Keep up the great work!!! |
|
Name: Debra S. Laubach Website: Adventure Angling Referred by: NewsGroups From: San Antonio, Texas Time: 1997-08-15 23:58:00 Comments: I have been trying to find information on my particular CHD - "anomalous LCX" - which wasn't discovered until 1992, when I was 39 years old. (Evidently, I was born without a left main coronary artery - at least according to the heart catheter report, my left main coronary artery is "absent"). My "sysmptoms" - the usual chest pain, heart palpitations, and shortness of breath - began during my first pregnancy (in 1972/73), but were dismissed as "first time mother jitters". As I aged (and with each subsequent pregnancies - a total of 3), my "symptoms" increased in both frequency and intensity. In 1991, I suffered a mild heart attack, which (with a family history of heart disease) prompted me to see a cardiologist. It was after a Thallium/Treadmill Stress Test revealed an "abnormality" that I underwent the heart catheter that uncovered the rare congenital heart defect. So far, my own "research" into heart defects - specifically my kind of defect - has been fruitless. (My current physician has never heard of such a defect, and suggested that I carry the "heart cath report" with me where ever I go , "because no one will every believe it").I joined the ACHD mailing list in August (97), which has been a wonderful support group, but I would appreciate any help in finding information on the kind of CHD that I have - "an anomalous LCX ", if that is truly what it is called. |
|
Name: Holly Scheyer Website: Adventure Angling Referred by: Word of Mouth From: Seattle Time: 1997-08-13 09:42:00 Comments: My daughter Sadie has Hypoplastic Left Heart Syndrome and has just come home after the completion of her Fontan repair. She's two years old and is incredibly bright and lovable. She had several complications from her surgery - a staph infection and also the nerve connecting to her right diaphragm was stretched causing it to be elevated. It doesn't seem to affect her much but sometimes she grunts when she breathes. She also doesn't seem to have much of an appetite since she got the infection. If anyone has had experience with these matters I would be interested in corresponding with you. Thanks, Holly (KFisher103@aol.com) |
| Name: Holly Scheyer Website: Adventure Angling Referred by: Word of Mouth From: Seattle Time: 1997-08-13 09:44:00 Comments: My daughter Sadie has Hypoplastic Left Heart Syndrome and has just come home after the completion of her Fontan repair. She's two years old and is incredibly bright and lovable. She had several complications from her surgery - a staph infection and also the nerve connecting to her right diaphragm was stretched causing it to be elevated. It doesn't seem to affect her much but sometimes she grunts when she breathes. She also doesn't seem to have much of an appetite since she got the infection. If anyone has had experience with these matters I would be interested in corresponding with you. Thanks, Holly (KFisher103@aol.com) |
|
Name: Barb Morgan Website: Adventure Angling Referred by: Just Surfed On In! From: West Springfield, MA Time: 1997-08-10 03:32:00 Comments: Our son Adam had a Fontan done at 3yrs of age in 1988. NOw experiencing pronounced fluid retention requiring permanent Lasix and Vasotec therapy. Not sure what this all means, but any help we can find is appreciated. We are scared this is the beginning of complete Fontan failure, thereby requiring transplantation. HELP !!!!! |
|
Name: Ted Miller Website: The County Mayo(Band)Webpage Referred by: Just Surfed On In! From: Sharon,Pa Time: 1997-08-06 05:26:00 Comments: My parents both died from heart attacks when they were in their 40s. My older brother died from a heart attack at 45. My younger brother had a mild heart attack when he was 33.(He's Okey now).My youngest brother survived a major heart attack last fall when he was 37. I had one episode of an atrial fibrillation a year and a half ago. The arrythmia was converted in a couple of hours and there has been no repeat to the best of my knowledge. I take lanoxin, visken,zocor and asprin. My sisters, aged 58, 50 and 43 all have all been treated for Cholesteral and or Blood pressure. My brothers and I have high stress jobs. Is anybody doing a study of families with this type of heart history? |
|
Name: Diane, Trent, Alexandra and Madison Website: Alexandra's Heart Page Referred by: Word of Mouth From: Canada Time: 1997-08-01 08:57:00 Comments: Great Web ring, Shawnie!! You did an excellent job on it, and I hope more people join the ring soon. Thank you. |
|
Name: Shawnie Website: Shawnie and Mildred's Home Page Referred by: From Geocities From: Port Orchard Wa Time: 1997-07-31 06:41:00 Comments: The webring has 12 sites now and has recieved over 400 hits in the one week it has been up. |
Great page...My 3 yr old son has HLHS and has had three corrective surgeries..I am looking for links for his page.*S*
See you soon
Just grazing,we lost our little girl last year with CHD and always keep an eye out for new sites
Official Status:
Child support has been determined, and will be paid on time.
Visitation has been set for a new hearing, however it appears the mother is now reluctant and is drawing straws at preventing me from seeing my daughter.
I enacted my visitation when we settled this, brought Cindy over for a day and had a ball, even Milie had a ball! She wouldn't let me leave hte room and knows that I am her daddy.
But now Shawnie wants to stop this visitation as I want it scheduled for every other weekend so I can plan ahead to have time off for my daughter, and yet it doesn't conform to her schedule so she is attempting to block it altogether.
Not a problem, we've hired one of the best attorney's and with the retaining fee we can have him handle this minute task and involve a parental investigator to show both sides.
I have nothing to hide and am willing to take any test or evaluation to show that I am a competent father.
Shawnie on the other hand is attempting to block this, but I have not figured out her motivation.
I'll post soon when I determine this.
Meanwhile, Cindy and my other two daughters are on my web site, see the link.
Scott
Hi cutie. Glad to see you are doing better. Sorry you have to have more surgrey. Bye Bye
We lost a grandson to HPLS. I'm just surfing the net reading other stories. Say, how can I join the webring for Congenital Heart Disease? Am I missing where to join? Please let me know. Thanks
Shawnie,
I wish you and Cindy and the rest of your family the best of luck. She is so cute and adorable. I know how it must feel, I have a 3 year old niece who is epileptic and autistic. So I know the hardaches you go through all the times in the hospital. She practically has her own room at Arnold Palmer Hospital. Take care of yourselves and little Cindy.
Sincerely,
Michelle
My son Spencer has a CHD also. Hope all is well. God Bless the children.
I love your page! Our nephew had a lot of the same heart defects you have mentioned. Feel free to come chat anytime!
Cindy,
I hope that we can play together sometime! I need a partner for teeter tottering!
Mellissa
Cindy babe what a cool sight I have to hang with my mom too when she surfs the web YUCK i know why your yelling on your page. would you like to be my friend?
I like your pages & your sense of humor.
MY GRANDDAUGHTER, MORGAN HAS A DOUBLE OUTLET RIGHT VENTRICLE AND IS SCHEDULED FOR FONTAN SURGERY ON OCTOBER 2, 1997 AT UNIVERSITY OF ALABAMA HOSPITAL IN BIRMINGHAM. HER DOCTOR WILL BE DR. PACIFICO.
SHE IS 6 MTHS OLD AND WEIGHS AROUND 8 LBS. SHE HAS ALSO BEEN DIAGNOSED AS HAVING GOLDENHAR SYNDROME.
You have a very interesting site. My 5 yo had a patent ductus arteriosus at birth. They did an echo at birth and again at 2.5 months. Fortunately, by the time of the second echo, the hole had closed by itself and she wouldn't need surgery. She is healthy as a horse now and so smart. I had almost forgotten about it. She is a cutie and I hope surgery goes well for her. It sounds so scary not knowing what will happen. You do have an interesting story. I liked the site that described what coarctation of the aorta was. It really helped me understand her problem. My 8 yo had RSV when she was 5 months old, but she was helped by nebulizer treatments in the ER and was able to go right home! Come and visit us when you get a chance!
You have a very interesting site. My 5 yo had a patent ductus arteriosus at birth. They did an echo at birth and again at 2.5 months. Fortunately, by the time of the second echo, the hole had closed by itself and she wouldn't need surgery. She is healthy as a horse now and so smart. I had almost forgotten about it. She is a cutie and I hope surgery goes well for her. It sounds so scary not knowing what will happen. You do have an interesting story. I liked the site that described what coarctation of the aorta was. It really helped me understand her problem. My 8 yo had RSV when she was 5 months old, but she was helped by nebulizer treatments in the ER and was able to go right home! Come and visit us when you get a chance!