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To be added to this List: email Sue Dove

This global waiting room is small and crowded with friends who have never met. We wait for news about children we love and the families who have become our own.

We get back up out of bed at night, stay up late, or get up earlier and check our email to get the latest news, hoping that the news will be good. We are on pins and needles during procedures, but knowing that it could be many hours or days until we can hear the outcome. We rush to work early to access email before the work day begins and we can have a few minutes to read and absorb all that has happened.

We pray hard when things are tough and we sing and dance (snoopy), when we can finally relax with good news and recoveries. We cry tears of such depth that our families are at a loss to understand how a machine can cause us so much pain. They see the emotional toll, but we are the ones who create and support this circle and we cannot break away when the the hurt seems to be more than we can endure.

We are with you in the days and weeks of waiting for surgeries and procedures that no child should ever have to endure. We are there with you when you hand your most beloved child to the physicians and nurses. We stand behind you in the waiting room and pace the hallways with you.

We know the look of a child on a respirator and the anxious feeling of wanting them to be independent of machines. We have experienced the joy of the successful surgery and the need to stroke a cheek and coo at the child we know we are fortunate to have yet.

The news travels to us all over the world and we collectively sigh, grin and shout and jump for joy. The meaning of each outcome is so clear and important to us. No achievement is too small to be recognized and celebrated. Our fears too are real, and sometimes realized. Our arms encircle you as you bear the weight of news that you cannot bear to hear. We too, want to block it out, deny the truth and run.

Your child and your family are a part of mine now. My calendar brings with it memories of children who struggled and lived and of those who fought so hard and died.
I will never forget them.

Written by Anita Marcelo, April, 2000

Click on the person's "real name" below to get to that person's homepage, if applicable. Clicking on the ICQ# will take you to that person's ICQ page, where you can page them or email them. If you don't have ICQ, we can put a click-able email address in the table instead of an ICQ number, if you would prefer. I'll also list IM nicknames if you'd like.

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Real Name NickName ICQ ,IM, or email COMMENTS
(Child's name, birth date, and CHD)
Andrea none Email me! Cameron-12 1/2, April 11 1/4, both HH, Damien 5/29/1998 Shone's Complex (Coarctation of the Aorta-Surgically repaired on 5/24/2001-Bicupsid Aortic Valve, Mitral Valve Stenosis) and Raiden 8/1/2000, HLHS- Heart Transplant at age 11 days. University of Michigan, Mott's Women and Children's Hospital in Ann Arbor by Dr. Richard Ohye.
Angela none Email me! Brooke, age 3 years (in 2005) has heterotaxy syndrome. Her full diagnoses are: av canal, double outlet right ventricle, dextrocardia, transposition (TGA), pulmonary atresia She's had a bt shunt, hemi-fontan, and is due for her fontan next week (8/2005). She also has asplenia and malrotation
Cyndee and Hiro Ababon none Email me! Alena 6/94, HH; Joshua 4/96 TAPVR, Hydrocephalus ; Caleb 8/99 TAPVR. Both boys doing great heart-wise.
Andrea none Email me! Daughter, born 5/2002 with Tetrology of Fallot. She has had one temporary surgery and is due for her total repair in May 2003, on her first birthday. I would like to talk to families who have children with this condition or who have gone through this themselves.
Vicki Baerg none Email me! Christopher, Tetralogy of Fallot, Andrew and Michael (twins), heart healthy.
Holly Baker Holly Email me! Jordan, 3/13/99, HLHS. Norwood at 6 days, BT Shunt at 5 mos., Hemi-Fontan at 11mos., and Fontan at 2 yrs. 5 mos. His siblings are Karisa (5/2/89), Nevin (11/7/90), & Logan (10/27/96).
Caryn Beck none Email me! Braden was born 10/02 with DORV, TGV, VSD, ASD and a prolapse Mitral Valve. Had a cardiac cath at 2 months of age. Had his first repair at 4 months with Dr. Frank Hanley at Lucille Packard Children's Hospital at Stanford. His second repair was at 10 months again working on the leaky Mitral Valve. He is now 5 years old, healthy, med free for over 4 years and he loves to swim and play with his new little (heart healthy) brother Berk. 9/07
Kelly Bentley none Email me! my son Tanner was born 9/21/07 and diagnosed with TOF 3 days after birth. Tanner had his complete repair on November 7 2007 which included a patch to cover the hole and widening of the immature valve.
Helen Prakelt Bishop none Email me! Haley (now 17!!, truncus arteriosus, type 1 .5 and applying to college!!! ) and Emily, 13 (hh)
Merita Blanchet none Email me! My son was born with Tetrology Of Fallot. It was repaired on his 5th birthday. He is now 33 years old. He is mentally challenged and has acute Kyphosis of the Thoracic spine which crowds his lung capacity. Genetically he has Micro deletion of 22 Q 11, very similar to DiGeorges Syndrome. He weighs 208 pounds, need I say he loves to eat. When he was 5 he only weighed 24 pounds. He has done really well. Please write me if you are concerned about the outlook for your child with TOF.
Tonya Bracken none Email me! Katie, born in March 2006. Norwood at 2 days old and Glenn at 5 months. We are currently waiting for the Fontan (hopefully not until late Spring-early Fall of 2008). She had a g-tube because of a paralyzed left vocal cord, but she got it out on her 1st birthday (great gift). She also has Wolff-Parkinson-White syndrome. I would love to her from other HLHS families. I live near Chatt. TN and would especially like to hear from anyone close to Tennessee.
Lenore Cameron none Email me! Jeffrey HLHS 6/6/96 and Matthew 2/6/93 Heart healthy
Janis Campeau none Email me! My son Will was born on May 2, 2002. He had his TGA repaired with an arterial switch at the Children's Hospital of Eastern Ontario when he was 4 days old.
Carola none Email me! My son Andrew was born 9/26/02 with transposition of the arteries, coarctation, and tricuspid valve atresia with hypoplastic right heart. He is doing very well. We have been involved with physical and occupational therapy. He graduated from a feeding tube. We live near San Francisco, California.
David Carpenter none Email me! Just came home (05/06) with first child born with three defects. Transposition of Great Vessels, VSD and interrupted aortic arch. Having a hard time coping and dealing with the worries of future problems
Kathy Case none Email me! Tricuspid Atresia, Arrhythmias, Fontan 1987, Ablation 2001
Ontario, Canada
catherine none Email me! My 10 month old Hana has an ASD
Steve Catoe none Email me! I am a 42 year old with Tricuspid Atresia who made it through three surgeries. I also write the "Adventures of a Funky Heart!" blog, http://tricuspid.wordpress.com/
Lacy Chenoweth none Email me! Lacy, 11/14/79 Tetralogy of Fallot. 8 open-heart surgeries to date. Future Transplant Candidate. Siblings: Angela 12/20/74, Bobby 11/28/75, Gary Jr 9/2/78 (diagnosed with brain cancer 1988) and Crystal 10/14/82.
Cherilyn none Email me! My daughter Taylor was born 12/14/06 with a very rare Truncas Arterious. We were told only three people in the world have had their truncas grow as hers did. However that is not our biggest problem Taylor also has a oversized tongue which falls back into her throat and covers her airway. So she in intubated right now until we decide which surgery to proceed with. This is a very had thing to live through so if anyone can offer us any news or comfort we are open to it.
Chris none Email me! Hi my name is Chris, I'm 25 years old. I wasn't supposed to live past age 2. My defect is called transposition of the greater vessels. I've had 6 open heart surgreys and a pacemaker difbulater put in. I'm interested in meeting people like me.
Lalaine Chua none Email me! Gerri, born Jan. 2003 with dextrocardia, corrected transposition of the arteries, ASD measuring 2.8 millimeter, and mild to moderate valve regurgitation.
Steve & Paula Clemons none Email me! Lara Clemons 2/21/98 (ASD and VSD)
Elizabeth Clingersmith ProjectDrw Email me! Andrew 8/27/96 ASD, VSD, HRHS, PA, and a transverse heart; BT Shunt 8/30/96 and Glenn 2/27/97; Fontan anytime from now until summer 1999, Nicole 4/2/93 Parasomniac, violent sleep walker, scizo-effective disorder, and obsessive-compulsive anxiety, Kiersten 1/23/91
Heather Cook none Email me! My son Orion was born 4/4/06. TOF post BT shunt, small ASD, muscular VSDs, bilateral SVC. He has also undergone surgery for a Nissen Fundoplication and GT tube. He going to have a complete repair around April 2007. We are in Southern California. Loma Linda Children's Hospital.
Vicky Cummings none Email me! Cassandra, born 18-12-99 with tricuspid Atresia, vsd,asd, pulmonary stenosis and hypoplastic right ventricle. She has had bt shunt which was taken down at 7 months old and replaced with the Glenn, still the fontan to go at 5 years, two heart healthy older brothers.
Laura & Bill Currie none Email me! Joshua, 11/22/99 with TGA, VSD, ASD doing very well. mild pulmonary stenois.
Cynthia none Email me! I have a dd who is 18 months (as of 8/13/06) and was diagnosed with Asd and pulmonary stenosis at 2 months old. She is still a candidate for ohs but can possibly have a catheter procedure done. We will know 4-07. She is very active and to the unkown you would never know she has a heart condition.
Denise B none Email me! My Granson Luc is 5 years old and has had a Glenn Shunt. He was due to have a Fontan on Thursday 29th June 2006. When they did the cardiac catherisation they said that the pressure in the lungs were too high and that the procedure could not be preformed and that it is too late.
Dan English none Email me! Bethany English, born in 2001, DORV, HRHS, TGA, PS, AVSD, Right Atrial Isomerism, Severe AV Valve leak, Bi-Lateral Superior Vena Cava, Situs Invertus (Stomach on the Right), Aspleenic, Neuroblastoma (Form of Cancer, Removed Feb 2001), Minor Brain Damage from Clotting/Strokes, Minor Fitting Episopes from Clotting/Strokes.
Julie and David Evanish none Email me! Nathaniel 3 (HH) and Jacob 11 months (TGA, s/p Arterial Switch June 2001)
Catherine Flannery none Email me! daughter Allycia Lynne has down syndrome and has a heart defect
Louann Flemming none Email me! Son ryan born 1/24/05 has tetrology of fallot and complete pulmonary atresia, not a canidate for heart and lung transplant. Would love to hear from parents with same out look
Libby Hamilton momtoquent Email me! Quentin, 5 1/2 yrs old - diagnosis unbalanced av canal with hypoplastic left ventricle and aorta. 4 surgeries, most recent June 1999 completion Fontan, will have a cath summer 2002 to close fenestration
Michelle Harmon none Email me! Zoe, 7/8/95, HLHS, Fontan '97
Carol and Chuck Heaton none Email me! Joseph Thomas, born Dec. 5, 2002, died April 25, 2003. Dextrocardia with situs ambiguous, abnormal venous connections, ASD and VSD, pulmonary vein stenosis, single ventricle, pulmonary artery to right of asending aorta and 3x larger, PDA, Coarctation (twice), 3 different holes, and a PA Band. Also a trach due to paralization of the left diaphragm, malrotation of the intestines, broviac, mickey button and an appendectomy.
carolynn hedges none Email me! my 10 month old son has Tetrology of Fallot, has had the first surgery and is due to have the next april 26th 2006 looking for shared stories and support
Liz Herrick none Email me! Maximillian was born with HLHS. He is now a year and a half and still keeps us on our toes. He has had the Norwood and the Bi-directional Glenn and stent implantation and the occasional cardiac caths. All of Max's procedures have been done at Childrens Memorial in Chicago. I would like to hear from families in the northwest suburb of Illinois (My family and I live in Barrington ) with a similar case. It would be nice to meet a family so our kids can meet.
Robyn Hershberger none Email me! Caleb Nathanael, 6/13/2001, Pulmonary Atresia, VSD, underdeveloped lung vessels, multiple collaterals
Erin Hinze none Email me! Maxwell Williams he has HLHS. he has has PA banding, a PDA stent and is preparing for Bi-directional Glen Shunt and Damus-Kaye-Stanzel on Monday, February 24, 2003
Doug & Jo Horne none Email me! Sophie, born 12/98 had a secundum ASD with tricuspid regurg etc etc which was repaired via open heart in May 2000 when she was 17 months old. Today she is doing well.
Kelly Houston none Email me! Patrick, born 7-15-98. Diagnosed with Wolff Parkinson White Syndrome. This condition is an extra pathway or pathways in the heart so the electrical part of the heart sometimes runs rapid ~ heart rate of 360 BPM. Most patients tolerate this well but some experience very troublesome palpitations, light-headedness and blackouts. A very small minority of patients may die suddenly from ventricular fibrillation. Patrick had an ablation done on Dec 27 2005 to destroy the extra pathway he has, but the ablation was not a success. We are waiting to see the Dr.
Jane Hunt none Email me! Marcus, 9-28-94, Single Ventricle: Ventricular inversion with transposition of the great arteries, pulmonary atresia. VSD & diminutive right ventricle. BT Shunt @ 6 days old, Glenn @ 5 months old & fenestrated Fontan @ 15 months. Brothers: Justis-9-9-88, Lucas-10-8-92
Julie Jacobe none Email me! Son Jared born 11-26-93 with truncus type 4. Doing well and is having third open heart next spring (2006).
Anna Jaworski none Email me! Alexander, 8-11-94, HLHS; post-Fontan by John Calhoon, M.D. of University Hospital, San Antonio; brother Joseph, 8-14-91, heart healthy
Jennifer msn messenger "Jayro" or AIM "BeanDontz" Email me! Travis-16, surgery 11/18/04 to correct left coronary anomaly, currently has VSD, prolapsed mitral valve moderate regurgitation, post-op leaking arotic valve. Two healthy heart younger siblings.
Nancy Jensen none Email me! Jessica, age 13! (pulmonary atresia, vsd, pulmonary artery stenosis & nonconfluent PA branches, hypertrophied RV, 5 heart surgeries, 2 strokes, now terminal), Justen 16 (ADD), Brandon 8 (depression & anxiety), Austin 6 (asthma) & wife to Karl in AZ.
Jill T Jill Email me! Alexander 11-12-94 HH, Christian 06-25-96 HH, Michael 02-24-98 fetal arrhythmia & 2nd degree heart block, Large ASD repaired with complication leading to 2nd surgery & a never before done cath procedure, post op sternal defect & some tachycardia. Aidan 06-19-00 ASD being monitored.
Sue Jonsson none Email me! my son Andrew is going to be 24 years old March 9th, 2009 and was born with TGA, PS and a VSD. He had three open heart surgeries one at Stanford and two at UCLA and just had a pacemaker put in last September. He is doing great and just graduated from Berekley in December, 2008
Jyotsna none Email me! Ananya (6-1/2 yrs -HH) and Diti (Glow of our lives) Born Oct. 30th 2001 with TGA (VSD & ASD)-Arterial switch surgery performed when she was 11 weeks old). We are based in Mumbai India.
Dawn King none Email me! Ben, 9/24/97, Post fontan, ex-G-tuber, pacemaker brothers, Jeffrey, 1/22/93 and Erik (twin) 9/24/97.
Pamela Lamb none Email me! Emily, born 2/16/99. Single ventricle,double inlet and outlet (vsd),pulmonary stenosis, a leaky valve. at 2 weeks she had a pa band and a pda banding put on and was treated for possible nec becouse of gi bleeding, at 7 months she had a glenn shunt and a atrial septectomy, at 25 months she had a fenistrated fontan. Emily has 4 siblings all older than her.
Laurie none Email me! Joseph, 4/21/2000, HLHS, post hemi-fontan and now awaiting the fontan, and Ashley, (6), HH.
David & Diane Laughton none Email me! Gregory David, born 28/12/00, ToF Diagnosed, awaiting surgery
Carrie Lee AOL IM: Gracefulangel15 Email me!  
Dolly Lee none Email me! Brady (8-9-84) and Andrew (10-3-89) Hypertrophic Obstructive Cardiomyopathy. Open heart surgery (Septal Myectomy) 2/96 and surgery to implant an Implantable Cardioverter Defibrillator (ICD) 6/99
Vicki Lucas none Email me Zachary Bernard Lucas, 1-18-95, HH, Alexander Miles Lucas, 8-9-97, HLHS with aortic atresia, coarctation of the ascending aorta, no mitral valve. Norwood 8-19-97 (with BT shunt and homograft donor aorta), emergency revision 8-20-97 (removed BT and put central shunt in), and Hemi-Fontan 3-24-98, expressive language delay, enrolled in a developmental preschool program. Ian Marshall Lucas, HH, preemie-5 weeks early @5.6 lbs
Kristi Maedgen none Email me! I have an almost 6 year old with TGA. He was corrected by arterial switch and is doing well.
Tricia & John Manuel none Email me! Jake Matthew Manuel, DOB 5/6/99. Coronary Arteriovenus Fistula Left Anterior Descending to Right Ventrical. First catheterization 12/99. 5/00, Jake had all but one fistula closed by coiling embolization. Future bypass surgery is expected. Jake also has autism, hypotonia, strabismus (corrected 8/01).
Monica Markel and Rick Turner AIM papergirl1216 Email me! Ben, born 08/08/97, had a very large VSD patched with Dacron when he was 4 1/2 months old.
Lisa and Chuck Marra none Email me! Maddie, born in 2005, Mason born in 2007, now 5 months. Mason was born with an ASD and Multiple VSD's. He was undiagnosed for a while, he was first hospitalized for SVT of the newborn. Then we noticed he was doing poorly and he was worsening - he was in complete heart failure and that's when they realized all of the problems. He has so many VSD's that they could not patch them they had to do the pulmonary artery banding and we get to pray that it works and fatten him up for future surgeries. To add to the problem he has bad reflux and is on Neocate (prescription only formula) so fattening him up is not easy....Just hoping everyday he will eat more and gain weight.
Terah Martar none Email me! Nathan, 21 months old, pulmonary atresia with intact ventricular septum. Bi-Directional Glenn 2/7/2001. Pulmonary stenosis in his left pulmonary artery. His right ventricle is completely non-functioning. Fontan completion tenatively scheduled for February 2003. Nathan has a cousin, Sarah, corrected ASD and VSD, Mitral valve regurgitation
Tabitha Mendoza none Email me! My son was born 3/21/07 with Congenitally Corrected L-Transposition (or Congenitally Corrected Transposition of the Great Arteries) and Epstein's/Ebstein's Anomaly of the Tricuspid Valve. We are going to the Children's Hospital in Philadelphia in November for recommendations for treatment.
Shelly Morrison ICQ # 72929647 Email me! Dillon Tyler Crawley 11-30-98 defects: TGA, PS, IAA, VSD surgeries: 12-08-98 (open heart), 11-17-99 (open heart), 05-00 (to remove broken sternal wires), 06-17-01 (open heart), facing complete valve replacement in the future caths: 10-99, 05-01 w/ failed balloon valvuloplasty. Surgeons: Dr. Elkins, Dr. Knott-Craig. Doctors: Dr. Ward, Dr. Razook, Dr. Overholt
Chris Mundt yahoo messanger id is mom2budnbug Email me! David, age 1 with Tetrology of Fallot (TOF) and Kayla, 6 (HH).
Tanya Newell none Email me! Kyler Brad, born April 8, 2002, unbalanced av canal defect, double outlet right ventricle, situs inversus, dextrocardia. He's had the pulmonary artery band and will have the Glen and Fontan in the future.
Nikki Jo none Email me! Nikki Jo 25 w/ Severe TOF with PA and DORV, 2 BT shunts, 2 Heart surgeries and Sinus Arrhythmia's
Nancy Novotny none Email me! Thomas was born on 3/23/07. One week old: dx with AV canal defect. Open heart to be scheduled in August 2007. I'm nervous about the surgery and would like to hear from others who have gone through it. Older son Jared healthy heart!
Bradley Oliver B.C. ICQ # 17549560 Norman, 9/1/89, CoA, ASD, sub-aortic stenosis times four, Aortic Valvotomy using the ATS (Acheiving the Standard) mechanical valve. Undergoing study of valve evaluation.
Megan Perkowski none Email me! I was born 1/22/1984 at Meriden-Wallingford Hospital in CT, but had all of my heart surgeries at Yale New Haven Hospital. I was born with Tricuspid Atresia and VSD.
James & Susan L Petersen aol IM suejimp Email me! Jamie Leigh, 8-21-97, "Complex Single Ventricle": Mitral Atresia, VSD, TGA, and Bi-Lateral SVC's. Hemi-Fontan - 1/7/1998, Fontan 7/16/99. Also mother of Gina Marie, (8 mos) small ASD, (closed)
Talia R. none Email me! Hadley, born June 1 2005, Pulmonic Stenosis
Emilie Reedy none Email me! Ben, born 8/27/04 with TGA. He underwent his surgery at 10days, had major complications witch left him in surgery for 15 hours, and was placed on ECMO for 5days. Since the surgey he has has had 2 more cath procedures for narrowing of the Aorta. Ben goes to Columbus Childrens Hospital
Michael Reynolds none Email me! Sophia, born October 27th, 2004. Tetralogy of Fallot w/pulmonary trunk atresia and Digeorge Syndrome. Check out her blog at: http://wisdomheart.blogspot.com/
Cheri Roe none Email me! Nicholas: birthdate 9-2-96, has an ASD. His is a primum septal defect or a partial canal defect. He had OH on May 3, 2001 to patch a hole and a cleft in the mitral valve. He is currently on medications for a leaky mitral valve and heart enlargement. He had surgery at Texas Children's hospital in Houston, Texas.
Toni Romayor none Email me! Giana Faithe was born on 02/24/05 7lb 5oz and 19in long full term. Her diagnosis is as follows: Double Inlet Left Ventricle, L- Transposition of the Greater Arteries(L-TGA) ASD and VSD. She has had 2 surgeries: her 1st was her biggest so far, 07/18/05- PDA Ligation, Damus Kaye Stansel, Atrial Septectomy,BT Shunt placement. 10/11/05- BT Shunt takedown and Bi-Directional Glenn. She has been doing very well since and we are looking to have a Fontan maybe next year. Since her birth she was diagnosed with WPW on her EKG's. I would be very interested in speaking with anyone who has had expierence with my daughters CHD.
Maria Rudesill none Email me! Isaac, treated for Transposition of the Greater Arteries (TGA) at three days old with open heart surgery and reconstruction to the main arteries. Now at one year of age, (as of 1/1/03) he is in wonderful health and the doctors are very happy with his progress.
Sarah Schlosser none Email me! Hi my name is Sarah, I have an almost 8 yr old with HLHS and a 13 yr old with a HH.
Serenity's Grandma Norma none Email me! Serenity Madison Osburn Brown, born on 6/7/00 with: VSD, Pulmonary atresia, atrium switch, right aortic arch, TGV, situs inversus. 5 open heart surgeries: BT shunt at 4 days old, Glen shunt at 4 months old. Senning & Rastili procedures & take glen shunt down at 2 years old. 7 months later had to redo surgery to correct problems and was placed on ECMO for 7 days. August 2003 stint placed in superior vena cava. April 2004 another stint placed above last one. Stint placed in left atrium above mitral valve 4/20/05 during last OHS. First two surgeries performed at Cincinnati's Children's hosp. The rest at Mott's Children's hospital in Ann Arbor, Michigan by Dr. Edward Bove. Serenity passed away on Nov. 30, 2005.
Deirdre Scalise none Email me! Joseph, born 7/7/03 with Tetralogy of Fallot
Dan Scheller none Email me! daughter Grace 3 years-old (as of 9-10-07) HLHS post-Fontan
Sharon none Email me! My Husband and I found out on 11/28/06 that our unborn daughter, Hannah, has DORV. Though we are trying to stay positive, we are still in quite a bit of shock. I'd love to hear from anyone else who has gone through this or from anyone who is currently going through this and would like someone to talk to.
Jill Skelton none Email me! Michael Skelton, born 12-8-89, TGA, COA, Pulmonic Stenosis, Arterial Switch, Coarctation repair
Debi Smart & Rick Gordon none Email me! Matthew Gordon - April 16/98, Tricuspid Atresia, ASD, VSD, HRHS, as of yet unnamed coronary artery defect and ventricular function problem. Surgeries: PDA Ligation, PA Banding, Bi-Directional Glenn, PA DeBanding
Robert & Rita Scoggins Rita Email me! Victoria, college freshman, 19, repaired coarctation, pa band, tricuspid atresia, asd, vsd, 12 yrs. post fontan, 6 stents,TCH; Bobby, 29 and Chris, 24 - both HH
Stephanie (Zakki's Mom) none Email me! Zakki Sartre Blatt Strunk, 3-1-94 TGA, LPA stenosis, left lung hypoplasia, Mismatch systemic collaterals, multiple embolizations, coils, pvp particles, hemorrhaging lungs, 5 massive hemorrhages from collaterals, stroke, left hemi seizures from mca infarct, temporal lobe arachnoid cyst, severe asthma/ Reactive airway disease, immunosuppression, homeschooled, life threatening reactions to all immunizations, minor reflux, paradoxical reactions to anesthesia, left diaphragm paralysis. Up to 57 doses of meds a day.
Aleasha Shelnutt ICQ # 131712184
yahoo ID is fleeting_whimsy
Email me! Justin Lee, HLHS, 2/25/01-5/16/01, James Ray, HH, 1/12/99, Jasen Riley, HH, 12/11/02.
Anita T. Simpson Anita T Email me! Freddie, 1/29/93, lTGV, ASD, VSD, PS - all repaired. Dextrocardia. Slightly pacemaker dependent.
Pam Sorrels none Email me! I have a 4 1/2 year old boy, Dalton. He has Hypoplastic Left Heart Syndrome and PDD-NOS. I would love to speak to another family who have the same DX.
Susanne none Email me! Sairah, born 19/19/92 with Transposition of the greater vessels. Had open heart surgery at 7 days old, heart cath in 2004 and 9/1/06 had a stent put in. She is very active, has figure skated, done karate, softball, and soccer. Plays clarinet in band and loves to sing.
Toni Swanson none Email me! Our son Clyde was born with HLHS in April 2005. He had his first surgery at 7 days, and his second at 6 months. I am interested in talking to other mom's that have gone through all of this and to talk about everyday life.
Talia R. none Email me! Hadley, born June 1 2005, Pulmonic Stenosis
Tammy none Email me! Sheridan,15.5, HH, and Ted, April 16, 1998, Single Ventricle, TAPVD, PS, TGV, DORV, Atrioventricular Canal Defects, Isomerism-lungs and kidneys, midline liver, asplenia, malrotated and malfixated bowels and stomach, AKA Ivemark Syndrome, BT Shunt @ 4 Days, Hemi-Fontan @ 4 Months, Fontan Completion @ 2 Years. 81 mg aspirin, 250 mg Amoxil tablet BID.
Ray Tinetti none Email me! Joel, 23 March 1986, Double inlet left ventricle. PA band at 14 months Fontan at 3 1/2, sister Miranda 2 December 1983. Perth Western Australia
Regina Trivelloni none Email me! Alyssa, age 5 (as of 6/2002), born with Truncus Arteriosus, failure to thrive, low muscle tone, j- tube fed, two Open Heart Surgeries, too many surgeries to count for the j-tube.
Goldie Valencia none Email me! My daughter Fatima was diagnosed with tricuspid atresia congenital with intact ventricular septum. She had her first surgery when she was 2 days old. She had her 4th and last surgery last January 2006.
Loni Vander Stel none Email me! Jessica Joy, born 9/12/96, repaired heart (10/29/97) at University of Michigan by Dr. Bove, heterotaxy, CCAVC, DORV/TOF, PS, subPS, ASD, VSD, etc.etc! (12/22/97) artificial mitral valve (on coumadin). Jessica has 11 heart healthy siblings and so far at almost 10 years post-op has not needed another surgery as originally predicted.
Henriėtte van Niekerk none Email me! son with TGA and COA
Kourtney Veiseh none Email me! We were told this last Friday (11/10/06) that my unborn daughter has the following: Transitional Artrial-Ventricular Canal Defect, Artial Septal Defect, Saml Ventricular Septal Defect, Cleft TVF & MV Any information you could provide would be appreciated!
Barbara Voliva ICQ # 158358271 Email me! Spencer, 9 months old (as of 4/2002), ASD,VSD,Coarctation of the Aorta,Transpotion of the Great Artaries and Double Outlet Right Ventricle.
Jackie Walter none Email me! Bicuspid Aortic Valve, Coarctation of the Aorta, VSD Age 27, operation at age 3
Carla Ward none Email me! Nicholas Ward, born and diagnosed in October 1995 with Tricuspid Atresia, ASD, VSD, PS, HRHS and has since developed multiple pulmonary emboli. Had a PA Banding, the Glenn and an extra-cardiac non-fenestrated Fontan at Green Lane Hospital, Auckland, New Zealand.
Donna Warner none Email me! Angela Nicole McClain ("Niki"), 8-4-1986 with TGA, large VSD, straddling right AV valve & hypoplastic right ventricle. She had a pulmonary banding surgery 10-7-1986 at University of Alabama at Birmingham by Dr. Pacifico. She underwent a Modified Fontan & pulmonary debanding on 7-6-1989 at Kosair's Childrens Hospital in Louisville, KY by Dr Mavroudus. She now has pulmonary stenosis, ASD, moderate mitral valve regurgitation and some arrhythmia. she has an older brother Jamie 4-22-1983 Heart Healthy!
Abbe Washington none Email me! I have two chilren, Allisa (my heart baby) born 4/25/00, who has TGA with a VSD. She had open heart in Nov '02 to have her VSD patched and a pacemaker put in. Logan born 11/15/01 is blessed with a healthy heart.
Kathryn Watcham ICQ # 2915666 Email me! Zachary DOB June 12 1995, Surgery for Corrected Tetralogy of Fallot with Pulmonary Stenosis at the Children's Hospital of Eastern Ontario Feb 1996. Youngest of 4 children, siblings heart healthy
Heidi Webster none Email me! My son's name is Matthew; his birthday is 3/5/02. He was diagnosed with Epstein's Anomaly of the Tricuspid Valve at age 4. His condition has worsened significantly over the past six months (November 2007) and we are awaiting the results of a team discussion to be held Monday by the Cardiologist.
Vanessa West none Email me! Arianna, born 11/26/06 with Tetralogy of Fallot
James and Joy Wetmore none Email me! Dakota, 8/22/97, Idiopathic Hypertrophic Subaortic Stenosis. (aka Hypertrophic Cardiomyopathy) Myotomy/Myectomy performed on 2/6/98. Sisters Kaytelyn, 12/16/94, and Erika, 11 weeks on 3/8/02, heart healthy.
Joe & Mimi Wilger none Email me! Our son Stephen has a BT Shunt.
Todd & Jeane' Wilkinson none Email me! Ethan (born March 18 2003), Singular ventricle with tricuspid atresia and pulmonary stenosis. He will have the Glenn at around 4-6 months and the Fontan around 2 years. Right now he takes Lasix once a day, Digoxin twice a day, calcium 4 times a day, and half a baby aspirin every other day. He is doing great and we are so proud of him.
Matt and Bekki Williams none Email me! We have 4 boys, our youngest Zach, was born with TAPVR, on August 5, 2003. He had surgery at 3 days old and has done phenomenal since!
Lara Wood none Email me! Lara--now an RN because of my son Ryan (8 yrs-10/12/99))HLHS,ADHD, former gtuber Visit our webpage! www.freewebs.com/medicalbracelet/ MedicAlert Bracelets available as well as a NEW parent handbook!
Suzy Yanez none Email me! Our son Tanner was born with at least 2 VSD's, one very large, a PDA, and a PFO. He had open heart surgery at 3 1/2 months old, and it was a complete repair, minus one VSD, which closed on its own 18 months later.


DISCLAIMER : The material on this website is intended to provide information, support, encouragement, and links for furthur research to the reader about certain medical conditions. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. These pages are for informational purposes only and should not be construed as medical advice for any specific facts or circumstances. Although we try to keep these pages current and accurate, you should not rely on this information or its applicability to any specific circumstances without first consulting your primary care physician or a specialist physician in the particular area of your concern.

If you believe you, your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.


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