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These are just a few of the children (and adults) affected by Congenital Heart Defects, the #1 Birth Defect. Please show your support for them by repinning their stories. Your pins will create awareness--and hopefully additional funding, resources, and research--for Congenital Heart Defects. We hope to include as many faces as we can on this board. Please visit http://www.atriptoholland.net/how-to-participate-in-the-pinterest-awareness-challenge/ to find out how to add a face.
This is Madison Savannah, born with HLHS. She's 11 years old & you'd NEVER know she's been through 3 open heart surgeries unless you were told. We found out about her condition when we had to rush her back to the ER less than 24 hrs after being discharged from the maternity ward, she came within 2-4 hours of losing her life & it was the scariest day of mine. She had her first operation at 10 days old, her chest was left open for 7 days & closed on Mother's Day, 2000. She's only been hospitalized once & that was just overnight when she caught Pnuemonia in kindergarten. Fast forward to today, she sees her cardiologist once a year, takes 2 medications & is extremely active & energetic. She loves to climb trees, ride her bike, bake & cook with mom, crafting, swimming, fishing, playing her piano, and all things Paris. NOTHING stops her from doing what she wants to do. Well, I don't let her do a few roller coasters & swim in freezing cold water, but that's about it!!! We are so thankful to our Lord for His grace. =)
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Ruth from Uploaded by user
My son, Bryson Young, was born with transposition of the great arteries, coarctation of the aorta, Taussing- Bing, VSD, ASD. We had no idea that our son had heart problems until he was born blue and almost died. By the time he was life-flighted to a hospital hours away he was in “profound shock”. He received open heart surgery when he was 14 days old and spent the next four months on a ventilator, fighting for his life. By the grace of God, he was finally healed and his now a spunky, crazy two-year-old.
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Our beautiful Claire was diagnosed in utero with Tetralogy of Fallot and Pulmonary Atresia. The months leading up to her birth were scary and nerve-wracking, but we feel so blessed to have known ahead of time so that we could be as prepared as possible for this special little girl. Claire was born on 10/11/10 and was pink, but had a rough start after suffering a cardiac arrest on her 2nd day of life, due to a pericardial effusion. The next week and a half were extremely difficult, but she pulled through and was able to have her full repair at 2 weeks. Today she is a happy, extremely affectionate 16-month old who loves being entertained by her big sisters! We thank God everyday for our sweet little miracle, and we are so grateful for the doctors and nurses at Children's Hospital of Wisconsin for taking such amazing care of our baby girl.
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Ruth from Uploaded by user
Sarah Love her!!
Shannon Paffenroth So happy to hear how things turned out. What a beautiful lil' girl!
Debi Marshall What a wonderful happy ending. God Bless you all. :)
Colleen Bocain God bless you all! And what a beautiful baby!
Shevoni "Chevy" Charles was born June 16th, 2011 with Hypoplastic Right Heart Syndrome. Her combination of defects included Pulmonary Atresia with IVS, Tricuspid Valve Hypoplasia and severe coronary sinusoids. Chevy underwent her first open heart surgery at the Children's Hospital of Atlanta at Egleston when she was only 6 days old with the BT Shunt and completed her 2nd surgery in November 2011 with the Glenn procedure. Throughout her battled she's endured two cardiac catherizations, a collapsed lung, and ongoing digestive and reflux issues along with all the other usual recovery experiences most heart babies face. Chevy is the epitome of strength, hope and resilience and has shown us all what it means to actually "put your heart into what matters". These children are not to be underestimated. When challenged with the choice to either fight or submit to being a victim of the "1 in 100" odds ... they will always fight first.
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Ruth from lovehalfhearted.com
Meet Jay. Jay is our handsome little heart hero - he's spunky and spirited and full of life. Most folks who meet him have no idea that in his short life he's endured congestive heart failure, two heart surgeries, a middle of the night heart attack followed by an hour of a half of unsuccessful CPR, and a week on ECMO (a form of heart-lung bypass). He has faced many complications along his road to recovery, but is now a walking, talking, giggling, tool-toting miracle. His favorite toy is a chainsaw, so we're convinced he'll grow up to become either a lumberjack or a cardiac surgeon. Whatever he becomes, his life is a testament to the good work of many doctors and many prayers offered up for him. Learn more about Jay's journey and our crazy life at torquilandcheezed....
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After the loss of our second child and over a year of secondary infertility, we secretly thought that God owed us a perfect pregnancy and birthing experience with our third child and maybe even a baby that was a good sleeper and a good eater... ha. We didn't necessarily get those things, but we wouldn't trade any of it for our Ruby, born July 25, 2011 with congenital heart defects. Ruby had joined the statistics, she was the 1 out of 100. We struggled with the feedings and sleeping, we were in and out of the hospital but most importantly her heart was successfully repaired on October 6, 2011. Being a Type 1 Diabetic, I struggle wondering what I did wrong during my pregnancy but am reassured that it had nothing to do with my very well controlled diabetes. Ruby is currently a bubbling little 6 month old who gives us so much joy and we thank God for her everyday. www.daleandhannah...
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Ruth from Uploaded by user
Anniston is a beautiful 2 1/2 year old girl who was born with the CHDs Interrupted Aortic Arch and VSD. When she was three days old, she had surgery to connect her aorta and to repair her VSD at the Children's Hospital of Philadelphia...a wonderful place! Anniston acquired an infection in her incision after surgery, so we were in the hospital for one month. She had a heart cath at 4 months to open her aorta which had narrowed significantly after her open heart surgery. She had a major stroke during her complicated cath (very, very rare for this to happen) and suffered seizures due to the stroke for a couple of months afterward, but is doing very well now! Her heart looks PERFECT (going for yearly checkups now!!), and she has been seizure free for two years this month!! We have some struggles related to her stroke, but she is so very healthy and such a blessing from God! Her doctors are always amazed at how bright she is and how well she is doing. We have to give ALL of the glory to Jesus Christ for healing our sweet girl and for holding us always. You can read more of her story here: martinfamilytimes...
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Ethan was born on Aug 24,2006. We knew from our 20 week ultrasound that he would be born with Hypoplastic Left Heart Syndrome. He crashed during a cath lab procedure the day he was born and came back to us on life support. After 6 days in the NICU he had his first open heart surgery, with two more to follow before his second birthday. He is an amazing little boy who is full of life and smiles. He loves Super Mario and playing with his siblings. Other than taking aspirin everyday and tuckering out a little bit quicker than other kids his age he is pretty much the same as any other 5 year old. His name is Ethan Drew and he is the face of CHD. ♥
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Ruth from Uploaded by user
On March 30, 2010, Annie Grace Sabin was born with multiple heart defects. Her official diagnosis was tetralogy of fallot with absent pulmonary valve. Over the course of her four-month life, Annie endured four major surgeries (two requiring bypass) and multiple minor surgeries. She was taken to the brink of death several times and continually amazed us with her will to live. For four months, she fought valiantly to be here with us. Her fight allowed us precious time to memorize tender details: her beautiful blue eyes, her long slender fingers and the dimple in the middle of her top lip. More importantly, these months gave us a chance to really know her gentle, patient spirit. Every day with Annie was a gift. She taught us much in her short life. Annie died on August 1, 2010. In our arms and close to our hearts, she took her last breath and passed away peacefully. We miss her. We love her. We will never be the same.
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Amanda Clayton I'm teary eyed... My daughter was born with Tetralogy of Fallot as well on January 20, 2010. This story hits close to home. Sorry for the loss.
Stephanie Wilkerson I am a NICU nurse and these babies still amaze me every day...God bless you!
Anita Szczepanski My 4 year old son has Hypoplastic Left heart Syndrome. I thank God every day because every day with these amazing children is a blessing. So glad to know it is Congenital Heart Awareness Week. Did not know that but will remember from now on. I am sorry for your loss and hope you find comfort in the sweet memories.
Frieda Cooley Thank you for sharing her story. She is beautiful:)
Erica Toyama What an incredible baby girl. I am in tears after reading your story. I'm so very, very sorry for your loss.
It is Congenital Heart Disease Awareness Week this week which coincidentally falls in the middle of HEART Month! I wanted to give a brief glimpse of my heart story to help put a face to CHD. I was born A LONG time ago ~ like 1971 with a hole in my heart Ventricular Septal Defect (VSD). At age 23 just a few days after my birthday I underwent emergency open heart surgery to repair the original hole that was in there between the bottom chambers of my heart (VSD) and to rebuild a leaflet of my aortic valve which had become mush due to a ruptured aortic aneurysm. While in there they found a third problem which they quickly repaired an Atrial Septal Defect (ASD). Mind you all this was done in 1994 and I am still around to blog about it. Four kids later, many speeches for the American Heart Association about it and I was even able to work for them for sometime which I just LOVED with all my HEART! Since my surgery I try to live life to the fullest as you can see from my blog. I try to try new things and have new experiences all the time. I also encourage women to be brave and get out there and LIVE, give adventure a chance you might just like it! Being that I was a kid with CHD I find children's heart stories touch my heart just as much as women's heart stories. Today, I take three medications that keep my safe and keep me alive. Due to my repaired heart I now live with Atrial Fibrillation (AFib) but I don't let that stop me from LIVING!
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Suzanne H. what a beautiful inspiration.
November 27, 2010 I gave birth to our stillborn son, Michael. I was 21 1/2 weeks pregnant on Thanksgiving Day when the ultrasound confirmed we had lost him. He had a congenital heart defect known as Ebstein's Anomaly that caused his heart to swell, so much so that there was too much pressure for his little frame to handle. Losing Michael was the hardest thing I have ever had to go through (and am still going through) but it has opened my eyes to the pain so many women suffer from during the loss of a pregnancy as well as those who suffer from having a child with a congenital heart defect. Michael will always be a special part of our little family and we look forward to the day when we will finally be able to meet him.
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Meet my amazing son Oakes: Today he is doing just fine! Oakes was diagnosed in utero with Truncus Arteriosis. Oakes has had open heart surgeries, dozens of procedures, cath lab trips, unbelievable amounts of medications, support and interventions. He has had complications and surprise diagnosis. Oakes is 11 months old, yet his story is big, and it is complex. Without a doubt part of his story is about donation. He has received donated blood, donated tissue, valves for his heart and most recently he recieved two donated lungs due to severely stenosed pulmonary veins. Like so many of his "heart baby" friends, he is beating the odds, he is fighting back, he is inspiring so many, he is keeping his brilliant doctors on their toes, and he brings an amazing about of joy and hope to those that know him. Thank you to those who support CHD research, those who care for CHD babies, and to everyone that has donated or will donate. My blog: babyortyl.blogspo... My family's foundation site: mightyoakes.org
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Ruth from Uploaded by user
Barbara Whetzel hugs and kisses and God Bless you both!
Melissa Langston What a fighter! Way to go!!
Katherine O'Neil very cue little boy you have! I will be praying for you both!
Christina Fox I heart Mighty Oakes! Love and Heartstrings tonight and everynight from DC! xoxoxo
Emma Burns Heart hugs!
Field was born with Double Inlet Left Ventricle, a serious and complex congenital heart defect. We did not know about the defect before his birth, but by the grace of God, a nurse "happened" to check his oxygen sats before discharge and found that they were very low. After 2 heart surgeries (Pulmonary Artery Banding and DKS/Bidirectional Glenn Shunt), one heart cath, and more medical check-ups than I can count, we have a healthy, thriving, and very smart toddler. Field has surpassed all expectations and continues to be a wonderful testimony to God's grace and protection. We still have one more surgery ahead of us (Fontan), but God is good and He will carry us through every twist and turn that life has for us. We are so blessed to be on this journey and so grateful for our precious son, Field.
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Maverick was born with HLHS in November of 2006. Hypoplastic Left Heart Syndrome is essentially being born with half a heart. He will forever have half a heart, surgeries don't "fix" his heart, they just reroute the blood helping his heart be able to function with only 1 atrium and 1 ventricle. He had his first open heart surgery at 4 days old, his 2nd open heart surgery at 8 months, and his 3rd surgery at 2 years old. Maverick is 5 years old now and the greatest BLESSING he is extremely smart and loves learning. Bring Awareness to CHD's and heart disease, it is so important!
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Ruth from Uploaded by user
Angela Savoie-Lange He's adorable and what a blessing to your family.
Lucinda Aldridge My son was born with Transposition of the Great Vessels and Ventricular Septal Defect and Left Ventricular Hypoplasia. He is 8 now and doing great. He had his first surgery at 20 hours old, his second at 6 months and his third at 3 years. Surgeries don't fix it, but they allow us to keep our treasures as long as we can. I love all the heart kids. I am now a respiratory therapist because of our experience. I get to help our heart kids and their parents. It's a great feeling.
Crystalbriere He is so handsome! Thinking of you and yours.
Ashley Crouse How precious
Kimberly Rippentrop My 9 year old son, Seth, also has HLHS. He's playing basketball for the second year thru Upwards. He's surprising us all!! Our HLHS kids are great teachers of faith. Maverick is precious. Look up HLHS~Hope on FB for more HLHS families.
Jaxon was born with HLHS in May 2008. We were not aware of his chd before he was born. He was rushed to St Louis Childrens Hospital when he was 4 days old. Jaxon's numerous surgeries and hospitilizations have brought on weight gain issues and developmental delays but our little hero faces each day with a smile and has overcome all of these struggles. He is very acitve and loves playing hide and seek and video games with his big sisters.
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Kimberly Rippentrop My 9 year old son, Seth, also has HLHS. He's playing basketball for the second year thru Upwards. He's surprising us all!! Our HLHS kids are great teachers of faith. Jaxson is precious. Look up HLHS~Hope on FB for more HLHS families.
Ella was born on the afternoon May 6, 2011 with no indication that anything was wrong. While pediatrician from our practice was evaluating her that evening, he said that he heard a murmur. When the murmur was still present the next day, it was off to Morgantown to the NICU for an Echo. Ella has passed all the tests that could be performed at our local hospital but the pediatrician said he just had a nagging feeling and really wanted her to have a Echo done. Ella was diagnosed with the Congenital Heart Defect Tetralogy of Fallot on Mother's Day weekend. Initially Ella's medical team thought she would be able to wait to 6-8 months to have her surgery due to her pink color and high oxygen levels, but she ended up having to have open heart surgery at WVU Hospital on July 12th at just 8 weeks old. She has recovered and is doing so well. We know that our journey is not over but are so thankful for the medical team at WVU Hospital and our local Pediatrician Dr. Steele who saved our amazing little girl!
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Ruth from Uploaded by user
Brooke Seacrist My son also had his surgery at WVU Ruby Memorial. They are a great team of cardiologist and I praise God for them. Our heart babies are such a blessing. Prayers for you and Ella. :)
Joy Brobeck (((HUGS)))
Paula Hatten Thank you ladies!
Kaden was born 8 lbs 10 oz on December 5, 2006. He appeared to be a perfectly healthy baby boy up until the day after he was born. On the routine newborn physical the doctors noticed Kaden's color was clammy instead of pink. Hours later he was transported to Sacred Heart Children's Hospital to the NICU and diagnosed with multiple heart defects...including Hypoplastic Left Heart Syndrome. Shortly after being diagnosed he was then transported 400 miles away from home to Winnie Palmer Hospital in Orlando FL where he was stabilized for the first of three open heart surgeries to reconstruct his tiny heart. Kaden had his first surgery "Norwood" at 6 days old, his "Bidirectional Glen" at 4 1/2 months old, and his "Fontan" at 3 1/2 years old.
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Ruth from Uploaded by user
Kimberly Rippentrop My 9 year old son, Seth, also has HLHS. He's playing basketball for the second year thru Upwards. He's surprising us all!! Our HLHS kids are great teachers of faith. Kaden is precious. Look up HLHS~Hope on FB for more HLHS families. And ROLL TIDE!!!!
Eli was our little surprise, later in life. The sonogram technicians at my OBGYN Clinic detected something just wasn't right when I was about 18 weeks pregnant. After spending the rest of the pregnancy in doctor appointment after doctor appointment, Eli made his grand entrance 3 weeks early on New Year's Eve 2010. He was diagnosed with an ASD, VSD & TGA (Transposition of the Great Arteries.) The second that he was born, we were not allowed to see him, he was immediately rushed to NICU where Dr Gaymes at UMC went in and enlarged one of the holes in his heart so that he could survive until surgery. They allowed him to grow, gain some strength & weight and on January 11, 2011, Dr. Jorge Salazar performed the arterial switch. Eli had a miraculous recovery and 8 days later we left the hospital with our sweet baby boy and brought him home to his Big Sister & Big Brother! He just turned 1 years old 12/31/2011 and I cannot imagine our lives without him! He's like every other one year old boy, full of life, laughter and in to everything he can get his hands on! We a truly blessed beyond messure!
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Rebecca Stanley He is adorable!!
Naomi’s 20 week ultrasound revealed an “abnormality” of blood flow in her heart. We were referred to a pediatric cardiologist who was unable to give her a diagnosis in utero, rather we were sent away with confidence that everything was going to be ok and we could have a normal delivery away from a specialty hospital. Naomi “Faith” was born nice and pink on 6/28/11 with great apgars and ate well. After firmly advocating for further testing, it was revealed that she was a not so healthy baby girl. She was diagnosed with Coarctation of the Aorta, 2-3 moderate sized VSDs, a Bicuspid Aortic Valve, and a Double Orifice Mitral Valve. She was immediately transferred via ambulance to Children’s Hospital of Wisconsin NICU. Seven days later she had a thoracotomy for Aorta repair, and had a band placed on her pulmonary artery to reduce the amount of shunting through her VSDs. Since then, she’s had two cardiac catheterizations to stretch the band on her artery to compensate for growth. We pray everyday that her defective valves will continue to cooperate, and that she will not have to endure open heart surgery in the Spring/Summer to repair her VSD’s, but that she will grow enough tissue on her own to close them. Naomi’s bright smile and strength has taught us a whole lot about what is important in life: Family, “Faith,” and Love.
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Thomas Quist I am so thankful you pushed for more testing. This is why newborn pulseox testing is so very important!
Chris Baur You are a force little one!! Rock on!!
Rebecca Stanley My son had many of the same defects - so glad to hear your sweet girl is doing well!
Rubi was born May 2011 at 38 weeks, weighed 4lbs 13oz, and was diagnosed as having a VSD in a postnatal echo within minutes of birth. For 3 months we watched for breathing and eating issues and we gave her her daily dose of Lasix. We saw her cardiologist bimonthly and prayed that the hole would close itself. At 3 months, the cardiologist said she would need surgery so on September 9th we did the scariest thing of our lives: put our little girl in the hands of a heart surgeon at Denver Children's Hospital. She was definitively diagnosed then as having Tetrology of Fallot. The surgeon successfully repaired her VSD, remedied her RVOTO, and closed her PFO. After four days in the CICU and three in a Progressive Care Unit, we got to take our precious Rubi home. She is almost 9 months old and is doing fabulously well. Her cardiologist is optimistic that she will never need another surgery. We are so thankful for her beautiful two-tooth smile and ringing laughter.
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Kelli Boreson I LOVE you Rubi girl.... ♥ Auntie Kelli....
LeeAnn DeWald Awe, shes precious!
Amy Blankenship-Williams Both my niece (6) and nephew (9)) were born with tetralogy of fallout, both have has surgeries, and are wonderful , thriving kids! Way to go Rubi, you are a precious little girl with a full life ahead of you!
callie wachendorf What a strong family! Shes so sweet!
We did not know that Carson had been born with ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery) until he coded at home on Memorial Day. He was resuscitated and transferred to Sunrise Children's Hospital for emergency open heart surgery the following day. I had no idea what a congenital heart defect was or how deeply it could impact a family, until it happened to mine. I am thankful for every single day that I get to spend with him. Though he has permanent damage to his left ventricle, his cardiac function is adequate with the help of medication. He is the happiest baby I have ever known. We are blessed, and I will spend the rest of my life paying that forward. vimeo.com/...
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Jennifer Roach I have a Carsyn heart baby, too! :)
Randi I have an ALCAPA baby too!
This is Elliott he's my little heart warrior. He was born December 27th, 2010 a perfectly healthy boy. We never had any indication that any thing was wrong and I never dreamed how quickly our life would change. Elliott was home with us for three and a half weeks before we had any idea that there was any thing wrong with him. He became ill over the course of 12 hours and before we knew it we were in the ER in the wee hours of the morning, and he was surrounded by a trauma team as my husband and I tried to grasp what was happening right be for our eyes. Over the next few hours we came to find out that Elliott had Transposition of the Great Arteries. By the time he was a month old my little guy would undergo a heart catheterization and have Arterial Switch. He recovered amazingly fast and is now a normal healthy little guy. I have learned so much from what he's gone through and my heart is so full of love for him!
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Ruth from Uploaded by user
Mandy Smith Im a TGA mom too...he is PRECIOUS!
Joy Brobeck I'd nerve known another TGA baby. I was blowen away when I saw how many are here.
Jill Houston TGA Mom here as well...my son is 5 now, and doing well. :)
Joy Brobeck After readind so many other stories I never realized how lucky we are that he had just TGA and not so many of the other problems that can go along with it.
My sweet Colin was born at 30 weeks gestation along with his 2 triplet brothers via Cesarean section on December 27, 2008. At 3 pounds and 4 ounces the doctors quickly realized that Colin was working too hard to breathe despite interventions. An echocardiogram diagnosed his heart defect which is Transposition of the Great Vessels. To make matters even more difficult, Colin was born with only one coronary artery. His subclavian artery was grafted to create a new coronary artery on his heart. Colin's Arterial Switch surgery was performed on January 6, 2009 and my resilient little fighter of a boy has been blossoming every day since! Colin never ceases to amaze both my husband and I. He is full of energy and smiles and is so very loved by his parents and 3 brothers. We are so very blessed that Colin not only survived his surgery, but has minimal limitations in the area of gross motor delay. My husband and I thank God every day for our precious Colin Bryan and our other 3 healthy children as well. www.there...
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Ruth from Uploaded by user
Lacee Mitchell What a beautiful boy!
Sibahan Sanders Colin is beautiful! I have an angel whos name is Colin bryan also. He died in 2004 from a heart condition.
Here is my heart baby, Aubrey. She was born on Sept. 14, 2011 after a normal pregnancy. She was diagnosed 2 days after she was born with a large VSD, bicuspid pulmonary valve, several small ASD's, and pulmonary stenosis. Before surgery, she simply didn't like to eat- it wore her out, caused rapid breathing, and therefore she was very underweight. She underwent open heart surgery on Dec. 22, 2011 and is now a thriving almost 5 month old- she gained over 2 lbs her first month post surgery!!! It was during surgery that she was found to be missing a thymus, which led to further genetic testing. It was found that Aubrey has 22q.11.2 deletion, otherwise known as DiGeorge Syndrome. We love our AWESOME AUBREY!
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Caelyn Mckenzie, born 2/11/11 with Tetralogy of Fallot. Had complete repair at 5 1/2 months old. She is now a spunky, loving soon-to-be 1 year old whom you'd never know anything was wrong with her little heart. She will need a pulmonary valve replacement in the future. She is my 1 in 100.
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Ruth from Uploaded by user
Tina Cochran My sweet granddaughter had her TOF repair at 5 weeks and is a spunky, sassy little 3 year old now! She does not need to see her cardiologist until she is 5!!! She may also need a valve replacement in the future but right now is so healthy and happy!
Tina Sprouse My son Benton also had TOF and ECCD, and died at 18 days. We had NO idea he was sick, he just went to sleep and woke up in Jesus arms. So glad to read about children who have survived this CHD! God Bless!
Samantha Kelly Seltzer My son was also born with TOF and had his repair at 4 months old. He will be 4 yrs old in April and has the same energy level as his twin sister. We have to see the cardiologist every year and will need a valve replacement in the future, God bless.
Jenn Neer Much love to you!
Milo is truely a miracle child! He was diagnosed with an aortic coarctation before birth and after birth many more defects were found although most of them were unrelated to his heart. At a week old he underwent a 6 hour surgery to repair his coarc and his trachea. Milo's future was still very uncertain but he fought and went on to thrive despite a tracheostomy and being ventilator dependant for 2 years. Last fall Milo had a stint placed in his right pulmonary artery through a cardiac catheritization, it is expected his left side will also need a stint in the future. Milo's many scars represent the difficulties he has encounted and conquered forming who he is today, a stong confident 5 year old. I am so proud and humbled to be the mother of such a special little guy.
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Janay Skinner That's my boy!
Madison was born on May 2nd, 2011. She is now 9 months old! Madison was born with several severe CHDs. Madison was essentially born with half of a heart. Her diagnosis is double inlet single ventricle (our pre-natal diagnosis was HLHS, but they cannot tell if she has the right or left side of her heart), dextrocardia, pulmonary atresia, stenosis of the LPA. In Madison's short life, she has had 2 heart surgeries and 2 heart caths. She has been intubated over 5 times, spent months in the hospital, and had countless tests. She will need a minimum of one more surgery. It is likely she will need a heart transplant one day. Madison has defeated all odds and is truly a miracle and blessing in our lives. She amazes us every single day. She is my hero and I love her more than words could ever express.
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Ruth from Uploaded by user
Brandi Gandy You can read about Madison's journey at www.caringbridge.org/visit/...
Frieda Cooley She's beautiful! Such pretty eyes.
Vickie Saunders So glad you did this!
Jennifer Killion Love this little girl!!!
Rebecca Stanley She is adorable!!
Charlie was born on July 30, 2004. We thought we had a perfectly healthy baby, so we were shocked and devastated when Charlie was transferred to the NICU when he was 18 hours old. The next few days were a terrible blur as he was taken to Children's Hospital and we learned that our baby had a complex congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Charlie has undergone 3 open heart surgeries and 3 heart catheterizations. His phenomenal team of doctors is led by Dr. Mark Galantowicz who does an alternative set of surgeries called "The Hybrid Approach." Charlie's journey hasn't been an easy one, but he has amazed us all along the way with his resilience and strength. He is now in first grade and does very well in school. He plays piano, and enjoys baseball and golf. He brings joy to every person that is lucky enough to know him and we are proud to be a part of his amazing story!
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Ruth from carepages.com
Bryan is our 5 year old son that had an ASD and a VSD repaired through open heart surgery. Bryan is our third child born to our family, I had 2 miscarriages one before and one after Bryan as well. I had a normal pregnancy, but after Bryan was born, and in the weeks following, we noticed things that seemed different from our older 2 kids. At 2 months old Bryan saw the cardiologist and was put on 2 different meds to help his heart. At 6 months old the cardiologist told us that Bryan would need surgery and at 8 months old Bryan had his heart repaired. After his heart surgery Bryan had a staph infection that sent him to the ER and his incision had to be cleaned out. Two years later Bryan was diagnosed with a chromosome deletion and at his young age he’s had 7 surgeries, has been seen by 8 different doctors and 5 different therapists. This year he started Kindergarten in a special ed classroom and is learning more everyday! God has used Bryan to teach me how to accept others for what they can do and celebrate every baby step of progress! He brings our family joy and laughter everyday and we thank God for blessing our family with him!
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Ashley Roberts Is It q22 deletion? Sometime called digeorge syndrome? My son was diagnosed with that deletion at 8 days old!
Rebecca Miller My daughter also has 22q.
Our first child, Luke Charles Valentino, was born January 19, 2010. We had an uncomplicated pregnancy and expected a perfectly healthy child, but when Luke was born, he was cyanotic (blue) and had a weak cry. The neonatal team knew something was wrong and immediately took our baby to the NICU. Two hours later, we were told Luke had Transposition of the Great Arteries (TGA) and required surgery. We were completed devastated. They transported him to Rady Children's Hospital here in San Diego, and at two days old, Luke had the Aterial Switch Procedure. The operation went seamlessly, and after 5 1/2 hours of surgery ~ including 88 minutes on bypass ~ they closed Luke's chest. Luke recovered without any complications in the NICU, and we brought him home 10 days later. Doctors considered Luke an absolute best case scenario, referring to him as a 'rockstar'; and while a day hasn't gone by that we haven't thought about those first few terrifying days of Luke's life, we feel incredibly blessed that our special son survived and is thriving! Luke is now 2 years old and loves to play with cars and his little brother Carter!
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Meleah Marie what a blessing!!
Amy Brown My son has the same defect. He had his surgery when he was 11 days old. He turned 5 in September and is doing wonderful.
Colleen West My nephew had this and is now 18. He is our day after Christmas gift. 12/26/93
Mandy Smith Thanks for sharing! We have a TGA sweetie too!
We found out at our 20 week ultrasound that our baby had a special heart. 3 days later we had our first fetal echo and found out some of the defects he had. When Greyson was born on 10/7/10 we found out that he has Double Outlet Right Ventricle, Transpostion of the Great Vessels, Pulmonary Stenosis, Sub-Pulmonic Blockage, and his valves attached through his VSD rather than straight down. He had an atrial balloon septostomy during his 2 week NICU stay and had his Glenn done on 2/22/11, going home after just 5 days. He will have another surgery when he is 3 to fully repair his heart and hopefully that will be all the surgeries he needs. We count our blessings every day for how lucky we are to have Greyson in our lives. He sure doesn't let his special heart slow him down any.
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Kael Keoni Adams was born Feb. 18, 2004. He was born with a rare and complex Congential Heart Defect, Taussig-Bing Anamonly. Taussig-Bing is a type of Double Outlet Right Ventricle,(DORV), that is always accompanied with Transposition of the Great Arteries,(TA), Subpulmonic Ventricular Septal Defect,(VSD),and Coarctation of the Aorta. Unfortunately, Kael is not a text-book case, he also now has Pulmonary Stenosis,(PS) and Pulmonary Hypertension. This came as a result from his first open heart, the Arterial Switch. His PA,(Pulmonary Artery), is not growing the way it should. Kael has had 2 open-heart surgeries, 6 Heart Catheterizations, and everything from Colonstomy to Tonsillectomy, thus totaling 13 surgeries and/or procedures to date. We are currently waiting for his 3rd open heart, a valve replacement in the very near future.
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Ruth from Uploaded by user
Melissa Graham Mulligan What a cutie! Best wishes for Kael's next surgery!
Kara Primeaux Adams Thank you. My sweet boy!
Kate Wagner He's such a cutie! Way to go, Kael!
Lacee Mitchell Keep up the fight, Kael! You rock!
Ashton is 14 years old. He was born September 21st, 1997. He was diagnosed with hypo-plastic left heart, dextrocardia, no pulmonary artery, ASD, VSD and the paton ductus was wrapped around the artery going to his left lung. Originally they told us he wouldn't be born alive. There has not been a year go by that Ashton hasn't had some sort of procedure done since he was born. Whether it be as major as surgery, or as simple as ultrasounds. He is a very strong kid and a great blessing to our family.
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Andrea Bunting Every one who follows me on Pinterest ~ PLEASE re-pin or like my friend Ashton! He is an amazing kid who has been though more than anyone his age should have. Pinterest is giving him recognition this week, way cool!
Our Miracle: Our HEART journey started with this sweet baby girl born with a BROKEN HEART.... and today that sweet baby girl is a fun, vivacious, 6 1/2 year old who unless you catch a glimpse of her "Special Heart Zipper" you would never guess that she had to fight for LIFE! She won that fight! Brynley's open heart surgery in May 2006 repaired two large Atrial Spetal Defects (ASD) and repaired a cleft in her mitral valve. It was a miracle that they found the defects in her tiny little heart and it was by Divine guidance that her surgeon was able to repair them. Now 6 years old, we give thanks that our sweet baby girl was given the opportunity to grow and thrive. Here’s to the opportunities that the future holds; to the passion and knowledge of medical professionals, to more advanced technology and care, and to those of us that can spread the message about heart defects, bring more funding, more research and better outcomes for kids born with CHD. And to our Family and friends that carried us through the roughest parts of this journey....THANK YOU! In honor of CHD awareness and "Princess B" Please wear RED February 7th-14th
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Ruth from Uploaded by user
At our anatomy ultrasound we learned not only that he was a boy, but there might be something wrong with his heart. They did not know exactly what it was, only that the left ventricle was way too big. After numerous appointments with doctors for the remainder of my pregnancy, they still were not positive exactly what it was, and needed to wait until he was born to determine exactly what was wrong. William was born on November 17, 2011. He had his first procedure, a cardiac catheterization on 11/18 before he was even 24 hours old. It was determined he had an Aortic to Left Ventricular Fistula (Tunnel) that was circulating the blood back into his LV making it do double the work. This CHD is extremely rare, literally a "one in a million" defect. On 11/21, at four days old, he had open heart surgery to patch the tunnel at UNC Children's Hospital. He was able to come home 10 days later, on his 2 week birthday. His heart murmur before the surgery was a Level 6, the highest possible, and also very rare, but now it is hardly noticeable by cardiologists!
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"This is Albie and he was born 23 February 2011 with a CHD (Transposition of the Great Arteries, Pulmonary Stenosis, Sub-Pulmonary Stenosis and a VSD). He has had three procedures and a shunt operation so far and we await open-heart surgery in the next few months. Its been a big year to say the least. But do you know what? Albie was born, like all of these fighters, not 'just' with a heart condition. He was born laden with many, many more gifts and he has taught me so much already. I know now what a marvel this life is and how much it is to be truly appreciated. I suppose it is fair to say that Albie's birth has brought me crashing, slap-bang right down into the present moment simply because the future is too unknown. This year has been one full of heartache. yes, but one that has filled me with gratefulness and humility too. And for that, and for him, I am forever thankful. "
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Jennifer Bradley My brother was also born with Transposition of the great vessels. Good luck with your fight.
Martha Montgomery U r awesome!
Sherri Birchwell He is beautiful, thank you for sharing.
Elizabeth Brown He is a beautiful baby- what a smile! Hang in there!
Marcelle Mahesh such a beautiful baby
This little Miracle is ShayLynn Rae Do. She was born July 30th 2011.We were unaware of Shaylynn's heart defect during pregnancy, so we were shocked and heartbroken when our Little Girl was born into this world fighting for her life. During her first examination, a murmur was heard. The doctors said they would watch her closely but that the majority of murmurs resolved after the first 24 hours of life, that wasnt the case for Shaylynn. They realized that she was born with Tetralogy of Fallot. (TOF) has 4 defects involved with it - large VSD, stenosis of the Pulmonary Artery, thickening of the muscle wall, and overriding aorta. While staying at the Hospital the Doctor's and Nurse's did TONS of test, to make sure everything else was developed right. Luckily everything else was fine, but we had a huge decision on doing a Full Repair Surgery. Once we got transferred to a children's hospital the doctors came to conclusion that Shaylynn was strong enough to do the Full Repair, So on August 17th 2011 Shaylynn went under the Knife for her First open Heart Surgery where they placed a patch over her heart. She will need another surgery when she’s older to correct or replace her leaky valve, but for now she is thriving both mentally and physically! She is my HEALTHY, ACTIVE, and AMAZING baby. My husband and I are very LUCKY to have the Skilled Doctors, Amazing Nurses, Family and Friends that have given us the strength to get thru this. As scared as we were, we know that we are extremely lucky that Shaylynn has done so well with her condition thus far. We are grateful for all of the research that is happening and are hopeful for more to come so that all children who are 1 in 100 can have a chance for a Happy &Healthy Heart.
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Casey Do thank you for putting it up there!!
This is Cora. She was born 6/3/11 and was diagnosed at 2.5 months of age with a Complete Atrioventricular Septal Defect, or AVSD. Cora was to be repaired at 4.5 months, but became critically ill around the same time. She needed to undergo a cardiac catheterization procedure before repair, but this couldn't happen until her general health improved. Cora's echos seemed to show an unbalanced defect and the surgeon was unclear what repair would be best. Cora was finally repaired on 12/9/11 and is now home with us, catching up on her developmental milestones and learning to eat again.
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I am the mother of Abbagail Paige Gaw. She has a mommy, daddy, and a big brother that love and miss her very much. She was born on 10/04/2011 and had breathing problems, resulting in being transferred to Monroe Carroll Juniors Children Hospital at Vanderbilt. She was diagnosed at 2 weeks old of a CCHD Total anomalous pulmonary venous return (TAPVR). She had 3 open heart surgeries, 2 cath labs, ECMO twice a total of 6 days all together, pace maker, ventilator, all kinds of iv meds for support the most being 15 at one time this all took place in 16 days. She also had Pulmonary hypertension caused by the TAPVR. She was put on ECMO due to not being able to come off the by pass machine after the surgeries. She was took off ECMO both times due to brain bleeds, she was not weaned off it was stopped all of a sudden, she did good a couple days then her pulmonary pressure wood stop to rise up until it got to high and we were told their was no medical explanition. Abbagail lost her battle on 11/03/2011.
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Ruth from Uploaded by user
frankye gaw my beautiful baby girl
Christina Paine My daughter was placed on ECMO after her heart surgery for 17 days. She passed away 11/30/2011 just 5 days shy of 4 months of age. I am truly sorry. God Bless you. Our children are angels together in heaven, playing, laughing, and happy.
frankye gaw Im so sorry Christina. I tell my self all the time that she is having a wonderful time playing with all the other children.
Angela D. HI this is a very hard one to read. my son had tapvr and he almost died. he is now two, i feel so lucky. thank you for sharing this.
Mandy Smith My heart breaks for you. SHe is beautiful. What a courageous baby!
Colin Bryan Sanders Colin was the second of my three children born. He was born a full term, and healthy baby boy. I was sent home when Colin was two days old, like any normal birth would have been sent home. After being home for a few days, I realized that Colin would no longer nurse. I switched to formula because he was having trouble. He slept much more than a normal infant would, but being that I had an 18 mo old child at home with him, I was happy he was a good sleeper. When Colin was 9 days old, I gave him a bath, and changed him into his PJ's on the living room floor. Not a peep came out of his mouth. All he wanted to do was sleep. That night, he stayed awake almost all night whining. He and I barely slept. I realized that for a baby who was 10 days old, to not eat more than 1 oz of formula all night, there was something wrong. Each time I gave him a bottle, he fell asleep after a half oz. The next morning I decided something was not right. I took him back to the hospital where he was born, as I entered the room, they ripped him from my arms, and called 'Code Blue' He was in very bad shape- i was told he would have died in the next 10 minutes if he had not arrived when he did. This was the moment my life changed forever. I never knew the signs and symptoms of a heart defect. I never knew it was something that could go undetected. The next few months were surgery after surgery, to correct the broken heart of my beautiful Angel. You may see scars, and pain....I only see my perfect Angel. Sadly, Colin died at 3.5 months old. He had an accident during his heart cath. So many children do not make it. My child is one of them. Our lives are forever changed. If we can save one child, with sharing his story, then his life was worth every second, and story told. ♥ www.colin...
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Ruth from Uploaded by user
Lisa Wilson my heart breaks for your loss! I hope his story helps others!
Rachel Fieseler I am a child that survived mine went undetected until I was 16. When I was rushed to the ER with a heart rate of 275. My heart had to be stopped and restarted. I went through three surgeries for my SVT. Then later found out at age 24 I had two very large holes in my heart. I now have a helix device in my heart. I am truly sorry for your loss. Your family is in my thoughts and prayers.
Linda Risener God bless you
Mary Nasky-Burns May God wrap his arms around you and help you deal with the loss of your precious Angel. Sorry for your loss.
Sibahan Sanders Thank you everyone for the kind words about my son. I appreciate it. He is truly my angel
This is our sweet girl, Charlotte. We found out at my 20 week appointment that we would be having a baby girl, but the technician could not get a good picture of her heart. The next 72 hours took us from elation to complete uncertainty. Charlotte was first diagnosed with aortic stenosis and then a few weeks later it was determined that she had Hypoplastic Left Heart Syndrome {HLHS}. We were lucky to be under the care of doctors with Duke University, and they certainly made the rest of my pregnancy and Charlotte's birth & subsequent care so bearable. Charlotte had open-heart surgery at three days old, and we took her home when she was 21 days old. She went home on a feeding {NG} tube and numerous medications, but she stayed very healthy and we easily settled into a routine with our heart baby. She had a second open-heart surgery at 8 months old, and the final surgery took place in April of 2011. Charlotte is now a thriving, happy three-year old who loves following her big brother around and serving as the official family princess.
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Ruth from tousey.wordpress.com
Brandi Gandy I so hope that can be my little girl one day! Madison also has a big brother, is single ventricle, and was diagnosed when I was 18 weeks pregnant. She is 3 months post Glenn and a miracle.
This is Crew. He was born healthy. When he was 5 weeks old, something just seemed a little off. He would go really pale while he slept, and just wasn't thriving like his three older sisters had. I took him to the pediatrician, who couldn't pin point what was wrong but sent us to the local children's hospital to get checked out. He was diagnosed with Cor Triatriatum and ASD. He had emergent open heart surgery that night. He amazed everyone involved in his care. He is a little fighter and recovered quickly. Shortly afterwards, he developed coarctation of the aorta, which he has now had repaired as well. He is almost 6 months old and still being watched closely, but is doing great. We are so in love with our little CHD warrior!
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Ruth from Uploaded by user
Rebecca Stanley He is beautiful! My little guy is 6 months old too :-)
I was born on August 22, 1971 a little after 10am and by 1 pm I was baptized and in the OR for the first of 2 Open Heart Surgeries. I was born with Pulmonary Atresia and a Small Right Ventricle and both my surgeries where to make a hole where the valve was supposed to be and then again to enlarge it. At 16 I developed Atrial Fibrilation and after exhausting all the medications, opted to have the bottom half of my heart controlled by a Pacemaker at the age of 21. At 30 my heart had enlarged and I entered Congestive Heart Failure. At 33 I developed Ventricular Tachycardia and had a Bi-Ventricular ICD inserted to solve the V-Tach problem and help my heart beat more efficiently. One year later I was looking at having a Double Valve Replacement, but my heart was not deemed healthy enough to survive Open Heart Surgery. After 6 years of hard work I have improved my heart function and I am once again facing that same surgery. Through all of this I have built a very active career and have lived a very active life. Some of my favorite things are kayaking, hiking, camping, wild life photography and playing my guitar. At this point there is no cure for CHD. It is a disease that impacts our life until the day we die. However, it does not mean that you can not have a life, if you are wiling to put forth some effort and focus on your goals.
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Chloe Quinnell God Bless!
Susan Wallace A true every day hero.
Dorothy Burns Hall Thank you for the reminder god is good and stay strong
Thomas Quist Inspiring! Thank you for sharing an Adult CHD perspective.
Her birthday was May 29th, and it would end up being a hot, humid day. I didn't get to hold her or take pictures with her. While I was strapped to the operating table, they brought her in briefly to show me she was fine and then they whisked her back outside with her daddy by her side. I felt good. -- I should have taken more pictures. Her birthday was a special day. I barely remember seeing her before she was taken by ambulance to another hospital. -- She was put through all kinds of tests and then we received the news that she was missing part of her heart. She'd been born with Hypoplastic Right Heart Syndrome or HRHS. There were a few other issues with her pulmonary valve and tricuspid valve, but she'd need surgery immediately. -- My child was born with Congenital Heart Defects and since May, 2004, she has had numerous heart procedures, 3 open heart surgeries, and other medical interventions. ♥ February 7-14 is CHD Awareness Week ♥ Please remember all of the Heart Warriors in the world... 1 in 100. 2divasandawife.bl...
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Trey was born late June 2011 and at 11 weeks he was diagnosed with ALCAPA, Anomalous Left Coronary Artery from the Pulmonary Artery, on September 12, 2011. He was in severe heart failure, his heart was working at 7%. We had no idea, he looked fine. The only problem he had was a strange breathing problem that only lasted a few minutes and had been attributed to a cold (an earlier NICU stay). His condition is rare, 1 in 300,000. He was on ECMO for 6 days and had an open chest for 10 days. After a month long stay in the hospital we were released to go home on a feeding tube and a drug wean. About 5 months later, Trey is thriving. It was a very hard wean from the feeding tube but we did it and his heart is now working within normal ranges on his heart medications. I blogged through his entire hospital stay and recovery, our story can be read by clicking on this pin.
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Katy Haiflich Congrads! Sad I Knew What all that meant our daughter too was on ECMO and we are doing great.
Stephanie Gunderson Amen!
Kelly Casada What a little fighter! I too was born with a congenital heart defect...42 years ago :)
Randi Thanks all! He fought through the entire thing! The nurses couldn't believe what a little wiggler he was on the amount of drugs he was on! Yes, Katy... isn't it amazing how much you learn??
Jennifer Price Go Trey!! Glad he's doing so well!
Luke was born April 7, 2010. Twenty-four hours after he was born he was transferred to Iowa City NICU. Luke was diagnosed with TRANSPOSITION OF THE GREAT ARTERIES, DOUBLE OUTLET RIGHT VENTRICLE and PULMINARY STENOSIS. At six months of age he underwent open heart surgery. He had the Glenn procedure. Luke will be two soon and he is like any other two year old boy. He gets winded easily and sometimes his color looks a little blue. But it doesn't slow him down. Luke will have his second open heart in a couple of years. We are blessed to have our little man!
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Stefenie Jacks My son, Logan was aslo born with D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and Right Aortic Arch. He had the Rastelli Procedure rather than the Glenn Glad your littel guy is doing well!!
Stefenie Jacks Oops, I forgot to add that he also had a VSD.
Jessica Knigge Our boys seem to have almost the exact same set of defects. Greyson also had the Glenn a year ago this month. They are 6 months apart in age. Do you all have a blog that I can follow your little man's journey? Greyson's blag can be found on his pin on this board or at www.greysonknigge.blogspot.com Glad Luke is doing so well.
Shaelynn is our little CHD survivor. She was born with an undiagnosed CHD, and at two weeks of age she was rushed to her pediatricians office after looking pale and not responding well. She presented with SVT (sino-ventricular tachycardia), with her heart beating around 270 beats per minute. After admittance to the hospital she was later diagnosed with DORV (Double Outlet Right Ventricle) accompanied by a large VSD (ventricular septal defect). Shaelynn had open heart surgery at six months of age to patch her hole and re-route her pulmonary artery. Her surgery went wonderfully, but after being transferred out of the ICU, she again suddenly went into tachycardia while I was holding her. Her heart reached a lethal 298 beats per minute and we came very very close to loosing her. After two cardioverts and multiple drugs, her heart finally returned to a normal rhythm. Since that day, Shaelynn has done beautifully, with no further SVT or heart problems. She is just left with an extremely loud murmur that reminds us all of her battle. Following her experiences, Shaelynn was featured on the Pennies by the Inch Brochure for PCMC in 2010. Our family has grown so much, and we are so thankful that she is a healthy and happy 3 year old today.
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LaCee Clayburn Our baby girl was rushed to PCMC at 1 week old in SVT at 280 BPM, by the time PCMC ER was able to get her back down to a normal 140 BPM she had been in SVT at 310 BPM for over 5 minutes, it took 2 tries of Adenosine and a high dose of propanolol. She was diagnosed with PJRT (Permanent or Persistent Junctional Reciprocating Tachycardia). We got lucky in our case, this is her only defect and can be controlled with the correct medication regimine, it took 3 weeks at PCMC before we got her on the medications that finally worked, Propanolol and Amiodarone. I'm so happy to hear about your beautiful daughter's success story! Such a cute, strong fighter!
Claire was born at 29 weeks with a critical congenital heart defect called Tetralogy of Fallot and a rare liver disease called Hepatic Mesenchymal Hamartoma. TOF has 4 defects involved with it - large VSD, stenosis of the Pulmonary Artery, thickening of the muscle wall, and overriding aorta. She also has a right aortic arch. Claire had her TOF full repair done at 4 1/2 months old. She has done great since her surgery! We are blessed with a very special daughter. Read more about Claire's journey on her blog!
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Kristen Goeser Ritchie Can't help but smile when I see Claire in this shirt! FOREVER our heart buddy, even though she lives half the country away!
Kathia Rodriguez She is adorable. I like her shirt.
Suzanne H. 1 in 100 she's a beauty.
Brittany Finch We love cousin Claire! She is awesome!
Our baby has PJRT, a persistent or permanent form of Supraventricular Tachycardia (SVT). Her heart thinks it's OK to beat twice as fast (sometimes faster) than normal. This can wear the heart muscle out and cause cardiac arrest. She was diagnosed at 1 week old when we knew something wasn't right because she all she wanted to do was sleep, no amount of coaxing could wake her even long enough to eat. She was rushed to the local children's hospital where we spent 3 weeks getting an official diagnosis, trying different medication combinations to slow her heart rate and keep it at a normal pace at all times. After 3 long weeks we got her on a combination of Propanolol and Amiodarone that worked. She is now 6 months old, each time she gains a significant amount of weight we have to adjust her medications due to breakthrough SVT episodes. She may or may not outgrow this condition, though we've been told PJRT is most unlikely. As she grows we will continually try weaning her off her meds to see if she has outgrown it, if she is still on meds at the age of 5 we will be going in for a catheter ablation to break the SVT. thestoryofababywi...
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Mayra J Moreno My husband's nephew now one week old, was in hospital yesterday, they've been doing test and said it was just low magnisum and calcium. He sleeps all day and started to have seizures and when she was pregnant they said he had a very fast strong heart beat. I wonder if this is a possiblity...
Jamie Fitch Prayers. She is beautiful!!!
Renee Hoskins 'Duarte' Sweet baby girl!!! I will be keeping her in my prayers
Hallie Campbell I had a similar condition when I was born. I finally outgrew it, but I owe it all to my Cardiologist Dr. Campbell at Sibley Heart in Atlanta. He taught my heart to convert itself back down whenever it would go into cardiac arrest.
Paige Longest Prayers for your sweet little girl! My son just turned one last week and was diagnosed with PJRT when he was just shy of 8 weeks old. He is on a combination of amiodarone and flecainide. I know how stressful it can be. Hugs to you and your family!
My name's Laura, I'm 24 and I'm a mom to the cutest lil puppy, favorite auntie to the best lil boy, a nurse, and a CHD survivor. I was born with a progressive form of SVT and a type of congenital sick sinus syndrome (basically my heart doesn't know to beat on its own). The SVT "hid" the SSS for nearly 18 years of my life and it wasn't until after 4 surgeries to try and control the SVT that we knew there was a worse defect underneath. I've struggled through infected devices, blood clots off pacer wires, and years of unknowns. Thankfully I've got a great cardiologist on board who has found a beautiful balance of medication and a pacemaker. Now with everything under control and stable, I'm able to focus on a career as a new nurse - specializing in pediatric cardiology :)
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Elisabeth Gawne My favorite chd warrior!!!
Carla Bickel Congrats on becoming a nurse!
Fetching pins…
Marguerite Furman God Bless you.
Jenn Neer love to you and your family
Ann Lagasse a smile to light up a room!
Kylie Gross my daughter also had hlhs. after the second surgery it was decided she needed a transplant instead. thanks for sharing your story and i'm so truly glad to hear shes doing so well!
Amber Gannon Medina Our daughter is 4 months old, and had her Norwood at 4 days old. She has had so many complications and has not been able to come home from the hospital yet-Thank You for sharing your story! It gives us so much hope!