Pinterest is an online pinboard.
Organize and share things you love.
This page is dedicated to spreading awareness for congenital heart defects (CHD). 1 in 100 babies are born with a CHD. It is the number one birth defect and sadly 4000 babies a year will not live to see their first birthday. My son Jacob is 1 in 100. He was born with Hypoplastic Left Heart Syndrome. He has already had 2 open surgeries and countless other procedures. He is my inspiration. February 7th through 14th is CHD Awareness week. These are the faces of the number one birth defect. Please share their stories and help us spread awareness.
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.
1 like
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.
1 like
Jayden was borning Jan 21 2010. When Jayden was 8 hrs old we find out he had a heart defect called Hypoplastic Left Heart Syndrome. He has had to open heart surgerys and getting ready to go for a third one in April. Jayden is the light of our familys life. He had his second heart surgery on April 8, 2010 and he came up with no vent but later that night his oxygen level drop to 5% so they had to put the vent in. I turn and starting crying cause I though that I was losing my baby and prayed to god to not let nothing happen to him. Jayden spent 5 month of the first part of his life in the hospital. Today he is a very active 2yr old.
1 like
Steampunk Tinker Heart Pendant Necklace by crabbycrafter on Etsy, $28.00
2 likes
The best CHD cause ever! @Kristine Brite McCormick
3 repins
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!
James's Project: An organization that helps moms and babies through patient safety education and awareness.
1 repin
Resources about newborn screening for heart defects--for advocacy efforts and expectant parents.
2 repins
Venetian glass heart pendant necklace by southpawstudio. Yummy red!
1 like 1 repin
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!
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.
1 like 1 repin
Information about newborn screening--important for mama to be to know.
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
1 like
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.
1 repin
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.
1 like 1 repin
When you look at 13 year old Jarod Davis, you will more than likely see a huge smile, and would never imagine all that he has had to go through in his short life. Born with a complex congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS), essentially half a heart, he started his life as a true fighter. He underwent his first open heart surgery at 2 days old, his second at 6 months old and third at 2 years old. Though his heart defect has been "repaired", it isn't "fixed" and may need more surgery. In addition to his heart defect, Jarod also has cerebral palsy, asthma, celiac disease and thyroid problems. Jarod is usually in the hospital at least yearly, sometimes more, for his asthma. Jarod is followed by multiple specialists at UVA and is on multiple daily medications. Despite all this, Jarod enjoys all life has to offer. He loves going to school and is active in Boy Scouts. He is the happiest child I know and a true fighter, my hero and inspiration.
1 repin
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.
1 repin
Taylee Hope When I was 20 weeks pregnant I went into my Dr just for a regular check up and ultra sound. The tech (while doing the ultra sound was very quite) a bit odd for me and I felt something in my heart was wrong. The tech manager came in and said "There's something wrong with your babys heart, it's not beating properly and it's very low. You need to go and see your OB now" I do as said and my OB walked in the door and I just remember holding my husbands hand so tight and she looked up at me and said, "She's not going to make it. We are gonna have you come back in and we will enduce you and let her pass on your chest" I CRIED hysterically. I then did what anyone else would do and I called my mom, who lives in PHX,AZ. She and my sisters and my brother and niece all came down to 29 Palms, CA and took me to AZ to the Good Sameritin Hospital where the specialize in High Risk Pregnancies. They did lots and lots of tests on me, (while I was still counting every movement I could from my baby girl). They didnt think either that our little Taylee would make it. They reffered me to a cardiologist the day after. I go in to them and they do a echo on Taylee through me. Taylee's heart was beating anwhere from 28-33 BMP. After the ultra sound they pull me into a room and sit us all down and tell us "it doesnt look good" She has the slowest heart rate any of them have ever seen before. Dr. Lineblade then went off to say that he will try. That there are a few things he can try to help her out. I was put on steriods and trabutaline (i never slept). While all this was going on, come to find out that I have Lupus and a antibody SSA. They say the SSA levels are what effect my daughter and that she has CHB "Complete Heatr Block". They didnt expect Taylee to get as far as she did. 33wks6days pregnant, they did a c section, Taylee's heart was not doing good and retaining more fluid around it. 1:43pm on June 10th 2001 Taylee Hope was born. The room was so quite and no one said anything. I didn't get to hear my baby cry, nothing. I got to see her for a brife secong before they rushed her off to Pheniox Childrens Hospital. She had surgery right after getting admitted. She had fluid removed from around her heart as well as a temporary pacer put in. At 2 months old, taylee finally gained enough weight to have her perm pacer put in and a week later we all got to go home. Today, Taylee is almost 8 months old and is doing great. She's advancing like she could and LOVES to eat. She's such a blessing to me and always will be. The Lord has blessed me so much to be able to have our son Kaiden (normal pregnancy) and Taylee. I am a very proud mommy.
1 repin
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.
1 like
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.
1 like
"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."
Adeline Jansen Bailey was born in November of 2009 with (complex) Hypoplastic Left Heart Syndrome. We found out about her heart during a routine ultrasound at 24 weeks gestation. I could write pages and pages of our experiences, fears, and miracles. Adeline was on 24 hour oxygen for the first few months of her life at home, has had 4 heart caths and two open heart surgeries. She will have another open heart and cath within the year. The doctors did not give her much a survival rate while in utero, but God had a different plan. She is my heart and soul. If I had to give any advice to other parents out there going through what we did two years ago I could say it in one word, TRUST.
1 repin
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!
Darla Jane was not pre-diagnosed, we found out the day after she was born that she had Hypoplastic Left Heart Syndrome. The left side of her heart had not developed at all. We were swept away to the local children's hospital as we were also swept into the world of congenital heart defects. There was so much to learn, so much to know, so much that we couldn't understand. But over these last 10 months we have learned so much and met so many people that will forever shape the rest of our lives. Darla Jane has had two open heart surgeries as well as two cardiac catherizations. She will have at least one more open heart surgery as well as multiple cardiac catherizations to enlarge the stent that is holding open her aorta. It wasn't anything we thought would ever happen to us but here we are.
1 repin
Annabelle was born on July 20th, 2010 with an unbalanced AVSD and hypoplastic left heart and aorta. She had her Norwood at 6 days old, and went into cardiac arrest 2 days later and was placed on ECMO support. The next three months were a complicated course of on and off the ventilator, finally prompting the surgeon to perform her Glenn early, only to have that fail and a different shunt placed instead. In January, 2011, doctors agreed that further surgery would be futile and recommended her to be listed for a heart transplant. The next three months were a mix of up and downs, watching our daughter get a little worse every day. She finally received her heart on April 9th, 2011, and came home for the first time on May 24th, 2011. Her new heart began failing in June, and another surgery was performed to relieve pressure on a coronary artery. She also had a severe episode of respiratory distress at home in July, causing her to need CPR and be life-lighted to the Vanderbilt Children’s Hospital. Today, Annabelle is 18-months old, is at home, and is doing FABULOUS! She’s taught us to walk each day in faith in God, and to never take a moment for granted.
Meet Matthew. He is Truly a Heart Warrior. When Matthew was born we knew he had a CHD called HLHS. He had his first open heart surgery (Norwood) at 3 days old. He coded for the first two days, but with lots of prayers and faith he came thru and got better and stronger. He was able to come home from the hospital at 4 weeks old. He was on oxygen and a feeding tube still and 8 different medications. It was a really tough road. Around 4 months old we were able to get rid of the feeding tube, that was a good day. At 5 months old he had a heart cath where they found his pumonary artery had scar tissue blocking it and they were able to succesfully balloon it open. Then he had his second open heart surgery (Glen) at 6 months old. He was only in the hospital for a week that time and did really well after surgery. He was able to get off the oxygen at 7 months. We were so excited! Matthew turned two in November 2011. Matthew has been a fabulous kid, he loves his big brother and sisters. He tries his best to do everything they do. He keeps mommy busy every single day by making lots of messes and destroying things, I say this with a smile on my face. Because we didnt know if our little heart hero would be able to do these kind of things, it is a blessing that he can! He has truly inspired us with his strength and loving nature. And we are so grateful to our Heavenly Father for sending him to us. Thank you for letting us share our story.
This is Nivar, 9. She was born with a heart defect (Tetralogy of Fallot) that threatened her life. Did you catch that past-tense? Her heart doesn't make any threats now. It was fixed last year by doctors outside of Iraq, and all of that was funded by a handful of compassionate, everyday do-gooders who hate CHD as much as you do. But Nivar is one of at least 30,000+ Iraqi children waiting in line for lifesaving surgery. And more are born everyday into a country incapable of helping them. This February, why not observe CHD Awareness Week by saving a child's life? Learn more: www.PreemptiveLov....
Lincoln was diagnosed with Transposition of the Great Arteries about 8 hours after he was born. A few days after that they also found he had VDA, ASD and a coarctaion. Upon realizing the other defects we were transferred from Primary Children's to Lucile Packard. Lincoln had his first procedure when he was a few hours old. He had open heart surgery when he was three weeks old. Lincoln is now 2 1/2 years old.
Anthony was born on 2-11-11 and was a "healthy" baby, so we thought! At about 22 hours of life Anthony was having trouble breathing. After a very long day of multiple tests it was confirmed that Anthony had CoArctation of the Aorta, DORV (Taussig-Bing type), ASD and PDA. This little angel spent the first month of his life in the hospital where he had his first OHS. At for months old he had his second OHS and spent another three weeks in the hospital he had multiple set backs, but he's a fighter and pulled through it! He's now about to turn one and is doing amazing! He is our miracle baby and brings such joy and happiness to our lives each and everyday. We are so grateful to all the wonderful people at PCMC that took care of him.
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.
1 comment
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.
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...
1 repin
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!
Jaxon is our little Heart Hero! We found out about his Heart condition when i had my ultrasound when i was 18 weeks pregnant. They kept a very close eye on our little guy for us. Ultrasounds every month and I had to have 2 fetal echo's. Jaxon was born on March 1, 2011 with Double Inlet Left Ventricle, hypoplastic right heart syndrome and pulmonary atresia. He had his first open heart surgery when he was 1 week old. He had no problems and was sent home a week and half later March 17 to be exact this day has always been very special to me and now even more! On July 22 he went in to have a sedated echo and a heart cath done get him ready for the next open heart surgery. After 3 hours of being away from my baby boy they paged us to come to the cath lab. Immediately we knew something was wrong the head nurse was pacing by the door, she came to us and said the he is crashing and they are working on getting him stable and then he will be rushed back for emergency heart surgery. The next stage of his surgery was done. Dr. Kaza his surgeon came and talked to us and he said "I was just thinking about Jaxon the other day and when they came in and told me about him I just thought oh no." He also told us "he scared the hell out of me but he definitely has someone watching over him!" I already knew he had someone watching over him he has many angels watching over him! We love all of his heart Doctors, nurses and surgeons they do an awesome job!
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.
Zachary was born in 2007 as a healthy baby, scored a 10 on the Apgar! At 2 days old one of the nurses heard a heart murmur and explained that there was probably nothing to worry about, but they wanted to run some tests. Those tests changed our lives! The next day we meet with a Cardiologist who explained to us that Zachary had Tetrology of Fallot and explained the defect to us and what to expect. We were terrified! The next three months were seamless, he had no blue spells and was seemingly healthy, gaining weight and meeting his milestones….we also stayed off Google! He had his correction surgery at 4 months old at St. Louis Children’s Hospital. He just turned 4 years old and is healthy and very energetic! He understands he has a “special heart” and even has a “special heart” friend! He will need another surgery when he’s older to correct or replace his leaky valve, but for now he is thriving both mentally and physically! He can read and loves to play sports!
CHD Awareness Week 2012 - February 7th-14th. 1 in 100 children are born with a congenital heart defect. Ethan was the 1. He was born on November 14th,2010 but was diagnosed with an intracardiac mass on his septum in utero at 37 weeks. Thankfully we were aware of his condition before he was born, but many chd's go undetected. CHD'S are the number one killer of children. We are very thankful that Ethan has not had to have surgery yet, but it is not out of the picture. At first his tumor was growing very rapidly, but not affecting the way his heart was working. It has slowed down and has even stopped growing over the last few months. This does not mean that it will not start growing again though. Please pray for the children with CHD'S and help us raise awareness! Do not forget to ask for a pulse ox check before you leave the hospital after you have a baby. It is not part of the mandatory testing they have to do (yet!) but it can help save your baby's life!
1 repin
Breanna was born on June 7, 2010, to the parents of Jason and Ashley. As excited as we were to have a beautiful new addition to our family, we also knew that our lives would be changed forever. Before Breanna was born, our world was rocked with the news that our baby girl would be born with Tricuspid Atresia, Transposition of the Great Arteries, Pulmonary Stenosis, and a double Superior Vena Cava. Found at 20 weeks, this defect essentially left our daughter with half of a heart. Her defects involved immediate intervention. After birth, our daughter was intubated and transported to Children's Memorial Hospital in Chicago. Within 3 days Breanna received her first corrective surgery. The operation lasted a total of 9 hours. Breanna had a fantastic recovery over the next week. The surgeons commented on how excited they were for her prognosis. They went as far as to call her, "their little rockstar." 7 days after her surgery they prepared to take the tube out that was breathing for her. We waited excitedly to see our daughter without the assistance of a ventilator. It turned out to be the scariest day of our life. The nurses called to inform us that 5 minutes after extubation, Breanna went into cardiac arrest. The events that ensued can only be categorized as miraculous. Amazingly, every doctor on the floor was present. Also, all three surgeons, that performed her procedure, were scrubbed and prepped for another surgery. Breanna was rushed into the OR where her chest was re-opened. Her heart snapped back and began beating normally. The next 9 hours were some of the most difficult moments that we have experienced. The surgeons struggled to understand what had happened. Ultimately, they decided to increase the size of Breanna's shunt, that passed blood to her lungs. We were told, "that all the stars in medicine aligned for your daughter today." The nurses, doctors, and surgeons were almost speechless. We know that it was more than "stars." What happened was simply a miracle. It was determined that Breanna experienced 8 minutes of "downtime." Because of the loss of oxygen, Breanna experienced injury to her lungs and kidneys. The weeks following involved an intense series of life-threatening events. Some such events include, fluid retention on her lungs that impaired her breathing and two invasive procedures to stop the fluid build-up. She also had 6 chest tubes inserted, endured several infections, and a blood infection that almost took her life. As parents, we could only sit back and watch our daughter suffer through these moments of unspeakable pain. During her long recovery, two more attempts to remove Breanna from the ventilator failed. After the third attempt, and at 3 months of age, We agreed to a Tracheostomy procedure. This established that Breanna would be on long term ventilation. Little is known about children that have serious congenital heart defects on long term ventilation. The uncertainty has been a very difficult prognosis for us to accept. By the grace of God, Breanna received her second major corrective surgery, the Glenn procedure. Even though she was still on the ventilator, which complicated her prognosis, she did very well. Her final surgery, the Fontan, will be conducted around 2-3 years old. She was allowed to go home on a ventilator on November 30, 2010, 1 week shy of 6 months in the Pediatric ICU. Breanna visits the heart clinic at Children's Memorial weekly and receives home nursing due to the demands and critical nature of her care. Breanna continues to amaze everyone. Her courage and strength in the face of such adversity is astounding. We are continually humbled by God's mercy. We are patient and know that His plan is perfect. We are happy to report that Breanna is off the ventilator! At 19 months, she still has weekly therapies and she has made fantastic strides! As parents, we have waited her first 6 months to publicly share our story as this has been a deeply personal and painful journey. Please join us in continued prayers for Breanna as she prepares for her next procedure. We extend our deepest thanks to our closest friends, neighbors, medical staff at Children's Memorial Hospital, Ronald McDonald House, and our home nurses, for their compassion and sincerity. It means so much to us that they have their love and support.
1 repin
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!
This is Severin he has CHDs but CHDs do not have him "Their stats" vs His stats "CHD" Isn't that what old people have? "Less then .03% chance of these heart defects happening." Who cares it happened to my baby - so that makes it 100% for him! "Only 60% chance of survival." Not today. PreDiagnosis: Tricuspid Artresia, Hypoplastic Right Heart Syndrome, Transposition of Great Arteries, Coarctation of the Aorta, Ventrical Septal Defect, Double Inlet Left Ventrical, his Pulmonary Artery is too big and his Aorta is too small. July 13,2010 First Open Heart Surgery Modified Norwood, Damas-Kaye Stansel, Coarch. repair,BT Shunt, ASD created Nov. 22, 2010 Pre Glenn Heart Cath Added to diagnosis: Pulmonary Stenosis, and Aorta has a "twist" November 24. 2010 Second Open Heart Surgery remove BT Shunt, Glenn Procedure, replaced 80% of his Pulmonary Artery Fontan in summer 2012 My Son is not a statistic. He is a SUPER HERO!
Christopher was born with a condition called Hypoplastic Left Heart Syndrome. Basically, the left side of his heart didn't develop. In order to survive, he has to have 3 surgeries to reroute his bloodflow so that the right side of the heart can manage the workload. He had the first of these surgeries when he was just 4 days old, and will have the next when he is about 6 months old. He has had some problems with reflux and feeding issues, as well as a paralyzed vocal chord as a result of injury to the nerve under the aorta. He has two older sisters (both heart healthy) who just adore him. He is such a happy little boy, and we just love having him in our family! You can visit our blog to read more about our story: mattemersonfamily...
Fetching pins…
$28.00
Lori Mowl Thinking of sweet Leyda today. She's celebrating the best birthday ever with her Father! Much love.