You know who you are. Once you are touched by a heart defect, you can’t imagine HOW you didn’t know about it before.
1in100 is about all of us. Those who know. And those who don’t know.
Either way, the 1in100 Crusade has the strength to open doors and make change. Please join in whatever capacity you are comfortable. There is much to be done. And the more you know, the more you can do.
Anne: Our son, Brendan, was a 1 in 100. He would be 27 ...
paula: My daughter Ella was born with ToF on May 6, 2011....
Angela Melum: Another one here with a coarction of the aorta who...
Caroline: Thank you for this as well. My son was born at a ...
Jessica: Thank you for the truths you wrote about today. My...
© 2012 1in100. All Rights Reserved.
Powered by Wordpress. Designed by 
I am 1 in 125 ( i live in the uk) i have Transposition of the great arteries iam now 22 will be 23 in march. i had the Senning’s procedure at 9 months old
Hi Zoe, it is the best thing in the world to get notes like this…from babies who had successful surgeries and are now living life as grown ups helping others! You should have a 1in100 Eye Opening Event on Feb 13…fun time to share with friends your great story. Where are you in the UK?
I am the first Fontan baby in the midwest, just turned 40 and please instill in your CHD babies and kids to: …..Always take your antibiotics before dentist appointment and NEVER miss your cardiology appointments. Life long follow up care is what allows CHD kids to grow up and have happy, healthy full lives.
My PCHD and ACHD cardiologist said the same thing Heather. Funny, it’s easy to say but when you experience regular cardiologists who are amazed at the loudness of the murmur and call people over to listen, it’s kinda disheartening. I’m lucky I found an ACHD. Turned out I needed a surgery again. As for the meds, some dentists will try to say we don’t need it. Don’t listen and take the meds!!!!
Heather, did I ask you yet where you live (or lived) as the first Fontan in the Midwest?? I’d love to post something here and on the Facebook page about that. So interesting! My grandmother was the 3rd person Dr. Lillehei operated on using the heart-lung machine (basically open heart surgery stopping the heart) in the 50s. It extended her life by nearly 6 years.
I hope you are having an event with those you care about on Feb 13. I’d love to mark you down as part of our 100 advocates events on that day! Cheers, Annamarie
I have to say thank you for all of the work that you are doing! I came across Cora’s Story and followed the link from her page to 1in100. Our family is 1in100. Our fifth child, and only daughter, was born with Truncus Arteriosus, VSD and an absent right pulmonary artery. She is currently waiting to have her heart repair in which the surgeons will be creating a pulmonary artery from adult-sized products. I was so excited to read that one of your priorities is to lobby for pediatric cardiac products. Please, count me in on this campaign. Life is busy around our house, but I also want to raise awareness and help spread the news about CHD.
Nancy, Thank you so much – your message made my day. I was just emailing Cora’s mom about some stuff, so funny that you sent this now! I hope your daughter is doing well and you are happy with the team of docs caring for her. Valves and arteries are such tricky business – we are lucky to have so many talented surgeons in our country. And yes, pediatric heart devices are an area of passion. I would happy to keep you posted on progress – plan to speak with the company locally here the first of March, and will be touching base with my contacts that moved things along at the FDA during my DC visit next week. There is another mom in North Carolina, whose little girl Abby Whaley, whose little girl Allie was the smallest valve replacement in the US – 7 days old and 7 pounds. Sadly, she passed on at 10 months. Her mother is a pillar of strength – and a huge advocate for helping pediatric surgeons get the tools they need. Call, email or post any time. You can always reach me on Facebook/1in100 too! All the best to your family, Annamarie
Annamarie, I just blogged about that great story that was posted on the Facebook site. The remote control band is really something – wish we had known about that before Rebekah’s band was done! Great article!
I am father to Eliah, who was born two years ago this Sunday with a CCHD. We were blessed that our Pediatrician caught it before we went home. He had surgery at 5 days old 6months old, open heart surgery this last summer and we are still going in for checkups. Keep up the good work of making people aware!
My son Omar is seven. He was just diagnosed with TAPVR in April 2010. He sailed through a diagnostic cardiac catheter yesterday. Next week it’s on to the open heart surgery. His prognosis is good, but our family is in shock. It’s unacceptable that this life-threatening condition wasn’t diagnosed years ago. He’s had growth problems since he was 5 months old, and respiratory illnesses throughout his life. He always met all his milestones, and is playful, smart and energetic. But he is the size of a four year old. We took him to various specialists throughout the years – a pediatric endodrinologist and a gastoenterologist. But they only look at their own specialty. Nobody mentioned the heart. Ever. This year, in first grade, his activity level in gym class escalated, and the teachers called attention to his breathlessness and the blueness of his lips when going up stairs after gym class. His regular pediatrician wrote it off as asthma and put him on an inhaler. When the teachers noted that there was no improvement, the pediatrician finally recommended that we visit a pulmonary specialist. Even then, it wasn’t until the third visit that the specialist measured Omar’s oxygen saturation level, and, seeing that it was in the mid 80′s, sent us to the emergency room, where the TAPVR diagnosis was finally made. Seven years and nobody said anything about a heart murmur or used the pulse oximeter. And this, in New York City, where our child was born in fancy Lenox Hill Hospital, and always had regular access to healthcare. As educated people, we’re ashamed that we his parents didn’t know to ask about the heart. I had no idea that congenital heart defects were so common – 1 in 100. There is no history of it on either side of the family. We’re so upset that the pulse oximeter wasn’t used sooner. Once we’re through this, and Omar is on the road to recovery, I want to do all I can to push for awareness. Every pediatrician should have a pulse oximeter and should use it as part of regular well-baby checkups. My good wishes and thoughts to all the families going through this ordeal.
Katie, Sorry for the late reply. Your story is STUNNING!! I’ve never heard of such a late diagnosis for TAPVR. While you must be so frustrated at the misdiagnosis – over and over..you should realize the it is truly incredible that Omar is still with us. You must have had surgery by now and hope to hear an update. Thinking of you guys!! Annamarie (you can email at annamarie@1in100.org
My daughter Charlotte is 1 in 100. I have been following your posts since we found out that Charlotte had pulmonary atresia at my 20 week ultrasound. Each and every time you post a new family’s story, I am amazed that I had never heard of such a thing until it was our reality. Charlotte was born on May 14, 2010 (3 weeks early, the little stinker). Her case was further complicated by a significant number of coronary fistula present in her RV. On her 1 week birthday, Charlotte had the BT shunt placed as well as a successful attempt to ligate the fistula. One week later she was taken back into surgery to open her RV outflow track. After a 1 month stay in Children’s Hospital in Omaha, we got to bring our special little lady home. She has been doing terrific so far and now we are taking one day at a time until we have to take her back for her next procedure.
Thank you for all of the work that you do for these special little babies and for providing a network for families like ours. I have shed so many tears and celebrated so many victories for families that are technically strangers, though I feel almost as though I know them. Our kiddos are truly amazing little fighters, and the same goes for the families who fight with them. Thank you again! ~Kristen Ritchie (http://littlemissritchie.blogspot.com)
I AM 1 IN 100!!! I was born with TOF..next Tuesday I will turn 39.. I have had a bypass shunt, 3 open heart surgeries, 5 heart caths, 2 mouth surgeries (born without roof of mouth) I now have a St Jude’s valve which I have had for 25 years. Not only am I a TOF SURVIVOR, but I am also now a BREAST CANCER SURVIVOR!!! Note to parents: DON’T GIVE UP…ALWAYS HAVE A POSITIVE ATTITUDE AND THE FAITH OF GOD WITH YOU….
My son Aharon was born with DILV, l-TGA, PS. We were fortunate to be diagnosed in utero as he was non symptomatic when he was born. He has had 2 surgeries since he was born on Feb 12, 2010. He has done so well. He seems like any other child until your see his warrior badge on his chest. I am amazed and insprired by the str strength and character of these little cardiac champions. May God bless and continue to watch over them all.
Our first baby, Brycen is 1 in 100! He was diagnosed with Transposition of the Great Arteries 4 hours after birth. He had open heart surgery on day 7 of life and is going to be 3 months old this week. My husband and I had never been privy to any information regarding CHDs before the birth of our son. To this day, we find ourselves feeling alone in the world as still, not many people understand or are aware of what a CHD is….especially those around us. I am so excited to have found your page and will be doing all I can to help this crusade! Much love!
Thanks Jessica! Spreading the word is what counts. I’m always amazed at the opportunities that open up! Hope Brycen is doing well! Annamarie
Happy Birthday Aharon! Thanks for posting this…I shared on the FB page too. They are an inspiration..all of them.
Annamarie
Our son Anthony is 1 in 100 he has HRHS and pulmonary atresia. He had the first of the 3 surgeries at 4 days old. The 2nd will be happening soon he is now 7mths old. It easy to get overwhelmed by all this, so it’s fantastic to see all the positive stories!
our son is 1 in 100. he was born august 22 2007 with tetralogy of fallot pulmoary astresia and an ASD. 3 open heart surgeries 2 caths later hes a hyper active 3 1/2 year old!
Hi everyone! I’m from Ireland. My son Richard is 1 in 100. He was diagnosed Transposition of great arteries, double outlet fight ventricle, Pulmonary atresis, VSD, PDA/ASD and stenotic left AV valve just 4 hrs after birth. He got 2 surgeries at this stage – Bt shunt (5 days old) and Glenn shunt (8 mths old).
Just came back from checkup yesteday (Eco, ECG), hes doing good. And believe me, hes the happiest 10 month old I’ve seen.
We are now getting bigger and stronger for Fontan thats promissed to be when hes 4 years old.
Doctors said that if I would be screened for CHD when more than 30 weeks pregnent they would know that something is wrong.
Totaly agree with Jessica – I didnt know about CHD befor giving birth to Richard and do feel alolne because lots of people just dont understand CHD…
We just found out that our son has Hypoplastic Left Heart Syndrome (possibly right). We are currently 22 weeks pregnant and so grateful that he has such a great chance medically.
Before this diagnosis I had no idea that it was so incredibly common for a heart defect to occur. We are 1 in 100.
<3
My daughter was born with, HRHS, pulmonary atresia, she has had 4 heart surgeries and is now pacemaker dependant..she is 1 in 100
My daughter Stella is 1 in 100. She was diagnosed with critical Aortic stenosis and severe mitral regurgitation while a fetus when I was about 20 weeks. This was leading to HLHS. Her left side of her heart was struggling to pump blood through the teeny tiny opening of the aortic valve. The left side was in danger of “dying”. Being rendered useless. Our wonderful doc gave us 3 options. Terminate, do nothing and hope for the best, or get Children’s Hospital Boston for in-utero surgery to try to open the valve with a fetal valvuloplasty. Our case was accepted into the Fetal Intervention Program and we were up in Boston having in-utero surgery by 23 weeks. The surgery was a success and Stella was born on Aug. 29th 2008 at 39 weeks. We opted to go to
(CONT) Boston for delivery (we are from Cleveland. The day she was born, she needed another balloon dilation of the valve, and again a week later. The in-utero surgerry had opened her valve and allowed the left side of the heart to not have to work so hard, but it still needed some help after delivery. Stella was able to come home after 3 months, and did spend alot of time in the Cleveland Clinic her first year. She started doing much better once we were able to get some weight on her. She had her first open-heart surgery last March at 18 mos. and flew threw with flying colors. They repaired her aortic valve and did an EFE scrapping of her left vent. (scrapped scar tissue out – 3mm’s thick!) which helped the whole heart to pump and relax more efficiently. Stella is an almost 3 year old who has surpassed everyone’s expectations 10 fold! She still needs surgery to repair the valve one more time and repair her mitral valve. When’s she older, they will have to replace the valve. But she’s doing amazing and has more than met her milestones! She needed a little help for a while from some OT/PT, but not anymore!
Thanks for such a wonderful website!
http://www.caringbridge.org/visit/babyternes
Thank you for your website! We too are 1 in 100. Our 4 month old Olivia was diagnosed with Tetrology of Fallot in utero. Like many others, we had NO IDEA how common CHDs were. The possibility of a CHD had never crossed my mind. Now here we sit waiting for surgery in the next few months. TOF has turned our world upside down, but I wouldn’t trade Olivia for anything. She is such a wonderful addition to our family. We are so blessed.
I am 1 in 100. I turn 40 in 4 days and have enjoyed every minute of my life. I was born with Pulmonary Atresia and Right Ventricular Hypertrophy. I’m afraid that I am reaching the end of the road for this old heart of mine. I have been forced to stop working over the last few months. I believe that soon I will be looking for a new heart and I’m torn about that. My life has been so wonderful the thought of someone having to lose theirs in order for me to continue truly saddens me.
Our daughter, Soleil, was born with heterotaxy syndrome and a single ventricle. When she was born, I was working in the adult cardiology field. I had NO IDEA about CHD in children!!! Outrageous, really. With great support and a positive outlook, she is a thriving 4 year old! The future seems very bright. I will continue to raise awareness and spread the word. THANK YOU for doing the same!!
Thanks Francine! I think we all feel that way…how could we not have known it affects do many babies! All the best to you and Soleil.
Ben is 1 in 100. Thanks 1 in 100 for all you do.
My son was 1 in 100! He was born with Transposition of the Great Arteries, Coarctation of the Aorta, VSD and ASD. We had no idea he had CHD’s until the day he was born. Our small hospital was not equipped to take care of such a sick baby and he came very close to dying. By the time he was life-flighted to a hospital six hours away he was in “profound shock”. He had surgery at 10 days old but due to his being so sick when he went into surgery and many other complications he spent the next four months on a ventilator fighting for his life. To say it was traumatic is the understatement of the year. I had low amniotic fluid throughout the last few months of the pregnancy and I have heard many other CHD mothers state that they had this too. I feel like it should have been a red flag. We are participating in a heart walk in October so I can spread awareness. There needs to be more simple tests done for babies both in utero and newborn. They test babies blood for over 1,000 illnesses and diseases but they can’t take a simple pulse ox reading? It isn’t right!
I am one in one-hundred. More like one in ten-thousand. I have wpw and I am 13 years old. I just found out a few weeks ago. I have to have a heart cath and take medicine. I hope to come out safe and cured by the time I am 14.
My daughter Tiffany will be 13 on NOV.10-TRULY AMAZING!She was born with hetertaxy syndrome (consisting of dextracardia aspleenia,single ventricle,TAPVR,situs inversus,AV canal complete,pulmonary valve stenosis,right aortic arch)she has undergone multiple open heart surgeries and has survived two failed fontan attempts.Transplant is not an option or any further surgeries.We hold on to hope that a device will be invented that will not require open heart surgery.She lives every day to the fullest and is an inspiration to us all!!
My princess is 1 in 100. At 4 months old, my little girl Jaida underwent open heart surgery for Tetralogy of Fallot. At this point we are praying for no more surgeries!! Jaida just turned two on November 11, & had a cardiac appointment November 15th. They are anticipating another surgery in her teens, but as of now her heart looks great!
My son is 1 in 100. The pediatrician heard the murmur at his first visit at just a few days old. It was weeks before our first cardiologist visit. He was diagnosed with a large VSD along with some minor ASDs. He soon went downhill with growth and feeding. Nursing did not last very long as he was too weak and didn’t get enough. He was eventually on 27 calorie/oz formula as well as the max dose if Digoxin and lasix.
At four months old he was just 10 1/2 lbs and had open heart surgery to repair his defect. He was only on bypass for about 20 min and the nurse said he was a “rockstar” in the operating room. We had a short stay at the hospital and no complications. Last year at his cardio check up we were told he doesn’t have to go back for 3 years. He won’t have to go back until he’s in kindergarten. I’m so pleased with the care he received. The frail little baby is now a very energetic 3 1/2 year old with no symptoms (other than recently diagnosed asthma).
We are very lucky that his defect was one of the easiest to fix. Ryan now has a baby brother who went through all the screenings in utero and has had no detected defects.
Ryan knows how he got his scar. Although I dont think he understands it, at least he can satisfy someone’s curiosity about it.
My son is one in 100. He is two years old and had OHS for TAPVR when he was 17 days old in 2009. I am still traumatized by the whole ordeal but am so glad for the awesome dr’s and nurses that helped him. I can’t believe these problems go undetected. My son’s was diagnosed on his routine two week check up becaus he was not eating and sleeping a lot. When they FINALLY did the pulse ox on him it was in the 60′s. We were rushed out of state at two am for his surgery on new year’s eve. He is a happy, and healthy boy and full of energy.
My son is 1 in 100. He has HLHs. We found out post deliver day two by chance of the pediatrician upon exit exam. Heard a minor murmur, did an echo and were then rushed to TCH. Saved his life. We are now a four months old and a week post Glen.
I was born with Aase syndrome which includes CHD.
With CHD I am only 1 in 100, but Aase syndrome is incredibly rare. So in reality I am the 1 out of a couple hundred that survived.
My son is 1 in 100. He was diagnosed with TAPVR at 11 weeks. When the surgeons started his surgery his heart started to fail, thankfully he came through the surgery. He is still having trouble now, and is facing a second surgery because he went so long with out the heart repair. A pulse ox screening would have completely omitted a possible second OHS. This screening should be manditory for every newborn.
My son Fletcher was 1in100. He was born 09/23/2011 as a healthy baby boy. Four days layer he went into heart failure and barely made it to the children’s hospital in Syracuse. He was diagnosed with a severe coarctation and several large vsd’s. As a result of his cardiogenic shock he suffered severe acute kidney failure. He was transferred to boston childrens’ hospital and underwent a hybrid procedure to palliate him. He unfortunately went through cardiac shock again 1and week prior to discharge. He was able to recover again enough to go through his big repair. Unfortunately, he was in bypass so long that he went through severe brain damage as a result. Im so heartbroken that my little man didn’t make it. He passed away dec 12, 2011.
My son David is 1 in 100. Shone’s Complex, today he is a 5 1/2 year old and doing great!
My daughter Ella was born with ToF on May 6, 2011. She had her surgery July 11, 3011. So far so good!
Our son, Brendan, was a 1 in 100. He would be 27 now. Ironically, we actually lost him during a very complex surgery at Boston Children’s on Valentine’s Day, 1986. Even after all of these years, the experiences surrounding his hospitalization and surgery are as fresh in our memories as if they had happened yesterday. We bless the memory of his caregivers and of his surgeon, and we cry whenever we hear of another little one who is a 1 in 100. Pulse oximiters are now being sold in discount drug stores, but we still fight to have them available for routine use in delivery rooms and nurseries. Please don’t give up the fight. Know that families like ours are still behind you all the way. God bless you and your children.