Comments on: Are You 1in100? http://1in100.org Know More. Do More. Tue, 15 May 2012 11:32:05 -0700 hourly 1 http://wordpress.org/?v=3.1.1 By: Anne http://1in100.org/test/comment-page-1/#comment-8803 Anne Tue, 15 May 2012 11:32:05 +0000 http://1in100.org/?page_id=16#comment-8803 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. 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.

]]> By: paula http://1in100.org/test/comment-page-1/#comment-8799 paula Tue, 15 May 2012 00:34:18 +0000 http://1in100.org/?page_id=16#comment-8799 My daughter Ella was born with ToF on May 6, 2011. She had her surgery July 11, 3011. So far so good! My daughter Ella was born with ToF on May 6, 2011. She had her surgery July 11, 3011. So far so good!

]]> By: Sarah http://1in100.org/test/comment-page-1/#comment-8360 Sarah Sun, 18 Mar 2012 17:43:46 +0000 http://1in100.org/?page_id=16#comment-8360 My son David is 1 in 100. Shone's Complex, today he is a 5 1/2 year old and doing great! My son David is 1 in 100. Shone’s Complex, today he is a 5 1/2 year old and doing great!

]]> By: rosy http://1in100.org/test/comment-page-1/#comment-7792 rosy Sat, 28 Jan 2012 15:53:37 +0000 http://1in100.org/?page_id=16#comment-7792 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 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.

]]> By: Tracy http://1in100.org/test/comment-page-1/#comment-7767 Tracy Thu, 26 Jan 2012 04:21:50 +0000 http://1in100.org/?page_id=16#comment-7767 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 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.

]]> By: Bethy http://1in100.org/test/comment-page-1/#comment-7399 Bethy Mon, 26 Dec 2011 02:41:52 +0000 http://1in100.org/?page_id=16#comment-7399 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. 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.

]]> By: Jessica http://1in100.org/test/comment-page-1/#comment-7370 Jessica Wed, 21 Dec 2011 16:37:39 +0000 http://1in100.org/?page_id=16#comment-7370 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. 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.

]]> By: angela http://1in100.org/test/comment-page-1/#comment-7339 angela Sat, 17 Dec 2011 19:39:04 +0000 http://1in100.org/?page_id=16#comment-7339 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 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.

]]> By: Karen http://1in100.org/test/comment-page-1/#comment-7308 Karen Tue, 13 Dec 2011 04:34:53 +0000 http://1in100.org/?page_id=16#comment-7308 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 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.

]]> By: Brandi http://1in100.org/test/comment-page-1/#comment-7215 Brandi Wed, 30 Nov 2011 02:56:44 +0000 http://1in100.org/?page_id=16#comment-7215 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 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!

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