Congenital Heart Defect Awareness
Landon was diagnosed with Pulmonary Artresia & Intact Ventricular Septum. Because of this his right ventricle never fully developed. Landon came into the world on April 3rd 2012 weighing 5Ibs 13oz He was immediately taken to the NICU. During his first two weeks of life, he went thru a heart cath and two open heart surgeries. Today Landon is 2 months old and you would never know from looking at him that there is anything wrong.
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.
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.
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!
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.
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.
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 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
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.
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!
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!
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.
This is my autobiography about growing up with heart disease. I wrote it for young adults who are growing up with heart disease or other chronic illnesses, as well as parents of young children growing up with heart disease. It's meant to help them see that I survived growing up with a congenital heart defect, and to give them hope for the future. I hope you will find my book helpful in your times of need. Reach for the stars, and make your dreams come true. I was born with Tetrology of Fallot. Growing up, I had to deal with several symptoms, such as being tired a lot and short of breath, and could not participate in a lot of activities I saw other kids doing. I missed a lot of school because I got sick easily. I had my first open heart surgery when I was 16, and discovered that it was not the cure-all I once thought it would be. I had dreamed that after having my surgery, I'd be able to run up a hill, but this was not the case. I did feel better, and the symptoms were less, but there were still things I couldn't do. Now that I'm an adult, I see new challenges in dealing with my heart problem. But I take things day-by-day, year-by-year, and have a wonderful support team to help me get through the rough times. For those of you dealing with CHD, or their loved ones, know that you will get through the rough patches, and that sunny days will prevail. God bless you all. Andi
Matthew was born with an undiagnosed congenital heart defect. Because blood oxygen testing is not mandatory for newborns I almost took him home. I will forever be grateful to a very observant nurse who thought his color was different when she saw him 24 hours after he was born. He had transposition of the great arteries and an ASD (hole). He had a septostomy at 3 days old and open heart surgery at 10 days old. Read more in my blog about our journey.
He has had two open-heart surgeries. One diaphragm surgery. Two cardiac catheterizations. Countless echocardiograms, EKGs, blood draws and chest x-rays. He sported a feeding tube through his nose into his tummy for four months to help him gain weight. He has spent 75 days in the hospital. And he’s only five. He is not only our heart hero, he is our hero and his name is Luke. Luke was born with only one ventricle, which without intervention, would have failed very early in his life. His heart will never be like yours and mine, but his heart has taught us more about love and faith and perseverance than we could ever have expected. Luke will need a third open-heart surgery in the next couple of years and he will need life-long medication and care. Our Luke would not be here today without the passion and knowledge of doctors who pursue better care and technology for kids like Luke. And the more we can spread the message about heart defects, the more funding, which leads to more research and better outcomes for these kids. Giving these kids every opportunity to live a full, long life is worth advocating for.