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.
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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)