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Our Angel Aaron was born April 19, 2011 and lived to the tender age of 2 1/2 months when he left us to return to his heavenly home on July 7, 2011. He was diagnosed in utero with Hypoplastic Left Heart Syndrome. When he was born he was stabilized and then transferred to the local Children's Hospital where they decided he really had Hypoplastic Right Heart/Tricuspid Atresia/Transposition of the Great Arteries (TGA). He had his first open heart surgery at 1 week old. He did great in his recovery until he had reoccurring bowel issues (NEC) that kept him in the hospital. He spent a majority of his short life there was able to be home with us for about 2 weeks before the PICC line he had gave him an infection which took him from us. We are so grateful to have had this Heart Hero in our lives and can't wait to be with him again! We hope that because of him we are able to help spread more awareness on CHDs.
I am 37 and was diagnosed at birth with a congenital heart defect TGA (Transposition of the Great Arteries). I had my open heart surgery (Mustard procedure) at the age of 2. Since then I have dealt with congestive heart failure and cardiac arrest. I have also experienced atrial fibrillation requiring several cardio versions and an ablation. In 2009 I received my 6th pacemaker. My 12 year old niece was was born with DILV (Double Inlet Left Ventricle) with TGA at 3 months old. She has had three open heart surgeries and is on her 3rd pacemaker. We recently found out that she needs yet another open OHS due to a scar tissue build up blocking a valve between the left and right ventricle. This picture is of the two of us at the 2011 Congenital Heart Walk in Columbus Ohio.
Mylah Leilani was born on October 1, 2011 with Tetralogy of Fallot. Diagnosed in utero she had open heart surgery at 5 days old to have a BT shunt placed. She recovered quickly and came home for the first time at 11 days old, post-surgery and continues to heal and is healthy. She is almost 4 months old, and she amazes us daily with her ability to teach us to love and show love. She has placed within us a dedication to be better cherish the simple and sweet moments in life. We are so grateful to the amazing staff at Children's Heart Center of Nevada and Sunrise Children's Hospital for their skills and expertise in saving and working towards healing Mylah's heart.
Three year old Jeanaveve was diagnosed with PAPVR at 15 months old. PAPVR is a congenital heart defect in which one or more pulmonary veins connects to the wrong side of the heart. In September of 2011, Jeanaveve showed us how brave and heroic she truly is by undergoing six hours of open heart surgery to correct her Congenital Heart Defect. While still recovering in the hospital, our little one befriended another patient and helped her get up and walk around, which speeds draining and healing.
This is my heart hero, Bodie. When I was 17 weeks pregnant with him, we found out he had Hypoplastic Left heart Syndrome and would need multiple open heart surgeries just to survive. He was born on February 16, 2010, with more fight in his little body than we could have ever imagined. He had his first open heart-surgery (the Norwood) at 5 days old, his second (an emergency shunt revision / pacemaker) at 2 months old, and his third (the bi-directional Glenn) at 7 months old. He spent 5 weeks in the hospital after his first surgery, 11½ weeks after his second due to hospital acquired infections and only 5 days after his third! Despite his incredibly rough start, spending 4½ of the first 5 months of his life in the hospital, he has truly defied the odds and is now doing amazingly well. He looks and acts just like any other little boy – all rough and tumble and boundless energy! He continues to inspire us and we are grateful every day that God chose to bless us with Bodie. You can follow our journey with our little inspiration at www.hopeforbabybe...
Aly was born with Hypoplastic Left Heart Syndrome on June 30, 2009. Already in her short little life, she has endured 4 open heart surgeries, 3 heart caths and 52 days in the hospital.... She has also been to Disney World, spent a week in Myrtle Beach, been camping, has a season pass to the zoo... all sorts of normal two year old stuff. :) You would never know if you saw her playing that she has a special heart. She is a blessing and a constant reminder that there is so much HOPE for children with CHD's.
Emily was born "healthy" on June 20, 2005. At 14 months old, she became big sister to Madelyn, who was born with a Critical Congenital Heart Defect. Despite our resquests to have Emily's heart tested, we were told it was next to impossible for Emily to also have a heart defect. In February 2008, I had a dream that a murmur was discovered in Emily's heart during a routine check-up. A day or two later, this dream became a reality. During a routine pediatric exam, a murmur was discovered in Emily's heart. She was sent for an echocardiogram and EKG (which was abnormal). In April 2008, Emily was diagnosed with MITRAL VALVE PROLAPSE with MlTRAL, AORTIC and PULMONIC REGURGITATION. Additionally, her PATENT FORAMEN OVALE was still open. She has been blessed to have "minor" defects, and sees her cardiologist annually to monitor her heart. As of to date, her mitral valve regurgitation is increasing. Like her sister, her future heart health is questionable. If her heart valve continues to leak, she will likely also face an invasive surgery to help mend her broken heart.
Our son, Ryan was born 18 years ago with an undiagnosed congenital heart defect. On the day he was born he flatlined in the cath lab where they were putting a hole in his heart to help keep him alive. Thank God he survived and had surgery when he was 15 days old to repair his ‘mixed up heart’ (Transposition of the Great Arterties). Ryan is a thriving young man who recently earned Most Physically Improved Cadet in his high school’s Air Force JRTOC program along with 3rd overall in Most Push-ups in the school – 2 feats we could never have imagined he’d achieve so many years ago! We are SO proud of him! He graduates this year and would love to join the service although that is not looking too promising as there is not enough awareness among the service to realize what a welcome asset he’d be, regardless of a congenital heart defect.
Our little Zeke was born with multiple heart defects which went undiagnosed for the first SEVEN weeks of his life. I had no idea what signs to look for and the day his little body quit working was a scary one. The ductus arteriosis is part of the heart that bypasses the lungs and takes blood straight to the body while in utero. It normally closes within the first 24 hours of life allowing the lungs to function at full capacity. Zeke's stayed open bypassing the coarctation in his aorta. His ductus closed and RSV hit him all at the same time. He was taken by life flight to Primary Children's Medical Center where for the next 5 months we were in and out and he underwent two open heart surgeries. The coactation created severe pressure in his lungs which led to severe pulmonary hypertension which led to a flailed mitral valve. We are one year past the initial tornado and he has just recently come off oxygen entirely. He has come down from 4 medications to 1 and is growing into a healthy boy. He will outgrow his repair and will need another surgery in the future. We are grateful for life and do our best to embrace the tiny tender moments.
When Kyra was born I was told she was a healthy perfect baby, she reached perfect numbers on all her tests. At 7 weeks old we ended up in emerg with what they said was the flu. After being admitted about 12 hours later she coded and was later diagnosed with dilated cardiomyopathy and aortic insufficiency. That was the day our journey began, October 9th, 2008. Since then we have over come many obstacles and also many joys. Although Kyras health is always a concern as she has other issues as well which effect her brain,stomach and lungs you wouldn't know it to look at her. She has lots of spunk and loves to play and loves princess'! My advice for other parents is to follow your instincts always, have a pulse ox done on your newborns and every day hug your kids and tell them how much you love them! ♥
My Husband is 38 and was diagnosed with TOF (Tetrology of Fallot) in June of 2009 and underwent a 14 hour surgery on July 17, 2009 to save his life. The day before my Husbands surgery, my daugther, who is now 2 and half was diagnosed with Pulmonary Stenosis with PDA and PFO. My Husband is going amazing today, he is still monitored every 6 months by doctors and is a walking miracle. My Daughter is monitored yearly and is dong good and thriving. I never knew how much CHD there are in this world until my Husband got sick and i reached out for support, through finding support I found many heart blogs that inspired me and helped me make it through every day on our road to repairing my Husbands heart. My Daughter was a little over a month old when my Husband was diagnosed. At first we were told he wouldn't live.
Carley was born a healthy 8lbs 7.5 oz in Dcember 2001. When she was 2 days old, she started turning dusky (blue) whenever she cried. Thanks to an observant nursery nurse (Laura) who recognized she was in distress and her Aunt Erica (an OB nurse) who recognized her symptoms as those of a heart defect, Carley immediately received life saving medical care. She was later diagnosed with a severe heart defect, Hypoplastic Left Heart Syndrome (HLHS), and was life flighted from Virginia to Children’s Hospital of Philadelphia in Pennsylvania where she underwent the 1st (Norwood) of 3 staged open heart surgeries. She had the 2nd (Glenn) surgery 7 months later and the 3rd (Fenestrated Fontan), and final planned surgery, 2 months before her 3rd Birthday. Today, Carley is a healthy, active 10 year old. She rides a bike, skiis, ice skates, swims, cheers, plays soccer and softball…she has even won the Physical Education of the Year Award 2 years in a row at her elementary school! Quite frankly, she is AMAZING! Though her heart defect is not cured, she will always be living with a 2 chamber heart, Carley is living a full life and we are thankful for every day we have with her here on this Earth!
Valeria is our first daughter and our special miracle sent from God. She was born on October 29th 2009. After seven days, she went into heart failure at home. After spending all night in the ER, she was diagnosed with a Congenital Heart Defect -Coarctation of the Aorta, Hypoplastic aortic arch, Ventricular Septal Defect and Atrial Septal Defect-. On November 12th 2009, when she was 2 weeks old Valeria underwent her Open Heart Surgery where doctors mended her little broken heart. Since Valeria got home, we have been back to the hospital for follow up cardiology appointments. Something the rest of her life will be filled with. We patiently wait for the next appointment to learn that she is doing GREAT! She may end up with another procedure, or she may never have to go through anything again. We have learned not to worry about that anymore and just live in the moment. We have learned so much about life in such a short amount of time. We have learned not to take the small things in life for granted. We appreciate the things we have, and treasure every second that we get with Valeria and the people we love. She is now a happy two year old girl and a proud big sister.
Leyda was born on 2005 with HLHS, a hypoplastic right lung and various other cardiac anomalies. She was prenatally diagnosised. Leyda came to us in 2006, at 17months old. Our adoption was final in 2008. She had her first 2 surgeries and g-tube placement, essentially alone. For her 3rd (Fontan) we stayed in the hospital with her every day....all 103 days. She suffered a stroke in the 24 hours following the Fontan, but eventually recovered 95%. She was able to get off oxygen and g-tube feeds - even had her button removed! Leyda was catching up on all her milestones and generally feeling well. She developed PLE (Protein Losing Enteropathy) in the Fall of 2009 as a consequence of the Fontan. Alubumin and lasix infusions became a part of life but we eventually found budesonide to control the PLE more completely. However in April of 2010 she had another stroke which took away her right side including speech. She recovered some communication but used an iPad with Proloquo2go as her communication device. It was difficult to walk or use her right arm/hand. Botox helped reduce her pain. In the summer of 2011 she began to decline and gained more fluid due to her heart failure not the PLE. She died on October 22nd 2011 peacefully at home, on Hospice, with her family around her. Feb 4th 2012 will be her 7th birthday.
Nicole was born in 1976 with situs inversus totalus, cctgv, ASD, VSD, and pulmonic stenosis. She has undergone a total of 20 surgeries including 2 open heart, 4 pacemakers, 3 ICDs, and many more. However, she's more than just a heart patient. She's also the mother to two year old twins through the miracle of surrogacy. CHD is a part of her life, not her whole life.
Our 'sweetheart' Maddie (Hypoplastic Right Heart Syndrome, Pulmonary Atresia, Ebstein's Anomoly) has been such a blessing! Four years ago, we prenatally found out about her broken heart...she has undergone 3 open-heart surgeries and 6 cardiac catheterization surgeries and we're blessed to say she's doing awesome! CHD has changed our lives and we thank the Lord for the miracle of Maddie!
"I had a very normal pregnancy and delivered my son, Benjy on 8/3/08. During his first examination, a murmur was heard. The doctors said they would watch him closely but that the majority of murmurs resolved after the first 24 hours of life. This was not the case with Benjy. After being discharged, we headed straight to see a cardiologist with the Cleveland Clinic Children's Hospital. Benjy was diagnosed with a moderate VSD and Bicuspid Aortic Valve. He was monitored closely through out his first year and around his first birthday, it was determined that his VSD was not going to close on it's own. On 12/9/09 he had surgery at the Cleveland Clinic Children's Hospital. He was found to actually have had 2 VSD's and each was sucessfully repaired. His Bicuspid Aortic Valve will have to be monitored for the rest of his life. Today Benjy is a happy and most importantly, healthy 3 1/2 year old. He loves trains and playing with his two older brothers. Our family is extremely grateful for the care that he received during his hospital stay."
William was born in October 2010 and appeared to be completely healthy. Two days later, as we were being discharged to go home from the hospital, an observant nurse escorting us to our car noticed Will's breathing was rapid and shallow and his color didn't look right. We returned with her to the nursery and as we watched through the window, a sinking feeling began to set in that something was seriously wrong. A couple of hours later, we were following our 2 day old baby in an ambulance to the local Children's Hospital. Our son was then diagnosed with HLHS and was fighting for his life after going into shock due to lack of blood flow to his body. Will had to recover for 3 weeks before he had his first open heart surgery, the Norwood-Sano. He did amazingly well and was released to go home 5 1/2 weeks after he entered the hospital. He had his 2nd open heart surgery in March 2011 and did wonderfully again and will most likely have his 3rd operation, the Fontan, sometime in the spring of 2013. Will is now a happy and healthy 16 month old and is hitting all of his milestones right on time. Life with a CHD kid is definitely different but it is still wonderful in every way!
Raygen is our 10-month-old daughter who at 19 weeks gestation was diagnosed with Hypoplastic Left Heart Syndrome. She was born on March 23rd and immediately transferred to Seattle Children's. When Raygen was 6 days old she undergone her first of 3 major open-heart surgeries, the Norwood. During the Norwood surgery Raygen's vocal cords were paralyzed and she underwent a tracheotomy at 2 months and was able to have her trake removed on November 18th. Raygen had her 2nd heart surgery the Glenn December 15th. Raygen will have her third open heart surgery the fontan hopefully around 2 to 3 years of age. She is such a miracle. She is so amazing. We pray that she continues to grow and get stronger.
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.
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!
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-bryan-s...
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.
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!
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!
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/...
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!
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.
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!
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.
Icing Smiles Inc. We are Baking a Difference Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time. Memories have magical powers. Long after the cake is gone, the memories linger-- memories of the kindness of a stranger, of the art of the design, of the sweet smells of a special treat, of the smiles and laughs, of a normal childhood experience so often stolen from these children. These memories are why we say, "It is so much more than a cake." Magic of a Smile Gala We are excited to be hosting our first fundraising gala on February 4, 2012 at the Amherst House in Columbia, MD. It will be a dessert reception and silent auction. Entertaiment will include a live cake decorating demonstration by celebrity chefs, Norman Davis and Zane Beg and roaming magic performed by Eric Henning. Did we mention the 18 foot dessert table? We hope to see you there.
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Amy's son, Bodie, 23 months thriving with HLHS You can follow Bodie's story at Hope for Baby Bennett Why am I fired up about CHD Awareness? I know a lot of you reading this are probably wondering "why is Amy STILL going on about CHD awareness and research? I mean, Bodie had a horrible start, but he's doing great now. Why can't she just let it rest and get on with her life?" (it's ok if you're thinking this - I'm sure you're not the only one) Here's why... I cry out for CHD research because my son's life depends on advances in medical technology. Currently, 75% of HLHS kids will make it to the age of FIVE (and that's the most positive statistic I've read - other stats say it's closer to 60 or 65%). How would you feel if you looked at your baby, knowing those odds? Wouldn't you fight with everything you had to improve those odds? Wouldn't you pour your heart and soul into asking everyone you knew to pay attention to CHD's and fund CHD research? I cry out for CHD research because my son will never be healed. He will always have a CHD.....(read in full on her blog).
Corbin was born 364 days after his big brother after a normal pregnancy. 5 days later we found out he had life threatening heart defects. He spent 81 days in the hospital, underwent three heart surgeries, one heart cath, and countless small procedures during his stay. He fought his disease like a lion and won over the hearts of the doctors and nurses at Ruby Memorial in Morgantown, Wv. He sadly passed away two days before he turned three months old, after his third heart surgery. His heart stopped and he gained his wings. My lion has taught me more then I ever thought a newborn could do. I now advocate for pulse ox testing and heart defect awareness. "I have loved you for a thousand years, and I will love you for a thousand more."
This is Grace, who is 8 years old. She has a Coarc Repair, ASD, VSD, Bicuspid Aortic Valve and a PFO. Her story can be found here: thedeependofthepu...
"Paul Cardall had end-stage heart failure. We talked about options. There were no easy options. He could choose to live or choose to die. The latter would be easier. He chose life, not passively, but vigorously, with the kind of energy that left me asking what I had been doing with my own life.” -Angela T. Yemtan, M.D., Director Adult Congenital Heart Program Intermountain Region To learn more about Paul and other people and families living with CHD, please visit mytricuspidatresi...
Nicholas - my CHD heart warrior! He is my 1 in 100. He is why I do what I do. Thanks bud!
Emily was born May 6th 2010. She was in my hospital room for 2 days she showed zero signs of having a problem. Our doctor heard a small murmur and said don't worry its probably nothing but I think her duct didn't close on her valve if we hear it in 24 hours then we will order some tests. The next morning they heard her murmur still and was then diagnosed with a severe heart defect called Hypo plastic left heart syndrome. She was then transferred to Loma Linda Childrens. LLC found she had even more complications with a coronary fistula. Only 30 documented babies have had this combo and 15 have survived past the first year of life. Emily was 2 days shy of her Norwood open heart surgery. She was with us for 10 days. It was a very hard 10 days but also wonderful days. She will always be in our heart.
This is Caleb. Caleb Maina was born on October 20th 2011 and diagnosed with Shone’s Complex with tight coactation, that is tightening of the valves in the heart. As a result Caleb cries a lot, is unable to breastfeed well and has little weight gain. Through Take Care Association Project www.thapkenya.org which assists kids from poor families with heart problems to get medical care either in Kenya or Internationaly, there is hope for Caleb. The organisation has been able to raise funds for the corrective surgery in India scheduled for first week of February but what’s holding them back is air fare. About Kshs 80,000 is needed for Caleb and his mum to travel for treatment to save his life.
Snuggly.Adorable.Hilarious.Captivating.During the past four years our daughter Olivia has spent over 130 days at The University of Iowa Children's Hospital. She has endured three open-heart surgeries as well as 5 heart catheters, and is a stroke survivor. Olivia was born with a severe congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). Simply put, this means she was born with only half a heart. This heart defect is the most complicated in the CHD family.
Charlotte Delene Ritchie was born on May 14, 2010 with a prenatal diagnosis of Pulmonary Atresia/Intact Ventricular Septum and HRHS. They said that her heart was "broken" but she never let it show. She had more fight and spunk in her than I had every seen before! On May 31, 2011, just two short weeks after celebrating her 1st birthday, Charlotte earned her wings. It was very sudden...very unexpected. In her short life our little girl endured more than most do in a life time, and she taught me more about life than I had learned in my previous 29 years. I am forever a better person because of my little Charley Bear and I will keep on living life with the purpose of making her proud. I love you baby girl. Always and forever.
This is my son Max. I had the perfect pregnancy and he was born perfectly healthy and weighed 8.5 lbs. He was a very fussy baby and I mentioned this to the doctors. They said it was gas. In the last two weeks of his life there were small changes, but I thought it was all normal baby behavior. On November 15th I left him for a minute or two, but my husband was in the room. I come back in and he is raising towards Max. He told me something was really wrong with him, and he stopped breath. He was rushed to the hospital and they could not revive him. We thought he choked. The next day we found out he had an undetected CHD. Max is 1 in 100 and lost his life to a rare CHD called Alcapa. We did not know the signs, and if we did this could have been prevented.
I'm a 24yr old CHDer with Tricuspid Atresa, Hypoplastic Right Heart Syndrome and other medical issues. I was not diagnosed till I was 11 weeks old and in severe heart failure. I was VERY lucky to be diagnosed and still alive as my Pulmonary Artery was almost 4x the size and could have burst. I've beaten many odds that were against me. I've been through 2 open heart surgeries (22yrs Post Fontan), many procedures, heart catherizations, and hundreds upon hundreds of tests, pokes, and prodes. I am not cured and will continue to go through pokes, prodes, tests, procedures, and even future surgeries. But there IS Hope! Over 50% of Adult CHDers are Adults! And we can lead fulfilling and happy lives! The sooner a CHD is diagnosed, the better the chances of a good outcome. Please educate yourself on CHDs and Pulse Ox screening for newborns. I am 1 in 100 and 1 in 100 can happen to anyone!
This is a white 100% cotton ringer shirt with black trim. It will have I believe in miracles, ask me about mine on the front and the Mended Little Hearts logo on the sleeve in black.
Our "heart hand" shirt is a red shirt and the back of shirt contains alternating white and blue handprints in the shape of a heart with text "Little Hearts Hold Big Hopes". The front of shirt has the MLH Logo in white.
Sisters by heart. An amazing organization helping recently diagnosed CHD families. They send out care packages. Truly amazing.
This is a pink 100% Cotton shirt with Mom of an Angel on the front and the Mended Little Hearts logo on the sleeve in white.
This is a white 100% Cotton shirt with I ♥ Someone with a CHD on the front and the Mended Little Hearts logo on the sleeve in black.
Purchase your Team Aron shirt and be part of something inspiring! This red cotton shirt has our precious Aron on the back and the front of the shirt has the MLH of Winchester Logo in white.
Madelynn Rose Addler was born in 2008 with no hint there was anything wrong. Eight weeks after birth an Urgent Care doctor found her CHD accidentally but completing an x-ray for a totally different issue. Two weeks later a pediatric cardiologist, explained there is no medical reason she sould be alive and she needs an emergency open heart surgery to save her life. She was diagnosed with a Coarchtation of the Aorta with some complications. After surgery she suffered a collapsed lung, paralysis her diaphragm and strep pneumonia. It has been an amazing journey back to some type of normalacy. We are grateful to the Sanger Heart Institute and the Levine Children's Hosptilal for saving her life. Awareness Saves Lives.
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