FOCUS : Congenital Heart Defect
Sweet Nectar Society is honored to highlight some of our heart warriors in this featured Congenital Heart Defect Focus Series.
“Congenital heart defects (CHD) are problems with the heart’s structure that are present at birth. Some examples of CHD include: holes in the inside walls of the heart and narrowed or leaky valves. More severe forms of CHD’s include blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.
Approximately one in every 100 babies born have some form of CHD, which makes CHD the most common birth defect in the United States. 25% of children with a CHD will require surgery or transplants to survive. Surgeries are not a cure for CHD, often times multiple surgeries are needed over time. Thanks to recent developments in treatment, life expectancy for children with CHD is beginning to improve.”
Double Outlet Right Ventricle
Angel Perez was diagnosis is DORV (Double Outlet Right Ventricle). He’s had 2 open heart surgeries the 1st at 11 days and the second at 6 months. He had a g-tube placed at 6 weeks and removed at 17 months, and back surgery this past July.
Angel is the 4th of 5 siblings, he loves Star Wars, and to give high fives, always has a smile from ear to ear and loves playing outdoors.
Hypoplastic Left Heart Syndrome
Annabella is a spunky 2 year old that brings so much joy to her parents and sister. She is full of energy and always on the go! She is an affectionate and caring toddler, who loves to give hugs and kisses. Annabella enjoys dancing, playing with her sister and watching Mickey Mouse Club House.
Annabelle was diagnosed with Hypoplastic Left Heart Syndrome at 3 days old, Annabella has undergone two open heart surgeries. She had her first surgery “the Norwood” at 2 weeks old, and at 7 months old she had her second surgery called “the Glenn”. She is a heart warrior who fought hard and will continue to fight through all the obstacles her condition may bring.
Annabelle inspires her entire family to live life to the fullest even through the most extraordinary struggles.
Hypoplastic Left Heart Syndrome, Congestive Heart Failure, Heart Transplant
Annalyce was born with Hypoplastic Left Heart Syndrome ( half a heart). She has gone through three open heart surgies. The first surgery was “the Norwood” at a week old (August 1, 2006). She stayed in the hospital for 7 weeks, we came home on feeding tube, oxygen and monitors. Her next surgery was “the Glen” at 4 1/2 months ( December 12, 2006), her hospital stay was 2 weeks. She came home Christmas morning. The last surgery was “the Fontan” at 5 1/2 (December 19, 2011) her hospital stay was 6 weeks.
Every surgery had a different set of obstacles for her to overcome, which was a roller coaster ride for her parents. Keeping their faith has always gotten us through each hurdle. Annalyce was diagnosed with (CHF) congestive heart failure, was put on the heart transplant list, and was transported to Lucille Packard Children’s Hospital at Stanford in Palo Alto. After a two weeks she was released to go home with a medication regiment to keep her going. Annalyce received her new heart on November 14, 2012.
Annalyce is a very brave, spirited, and outgoing little girl with a huge smile. She lights up the room with her laughter. She seems to take every procedure & surgery as they come with little complaint. Her parents thank God everyday for bring her into their lives. Annalyce has touched so many lives with her story and her love. She enjoys singing, dancing and dress up like any other little girl.
VSD of the Heart, Hydronephrosis (Dilated) of his Right kidney, Trisomy 21- Down Syndrome
Anthony was born in June 2014 and diagnosed VSD of the Heart, Hydronephrosis (Dilated)of his Right kidney, Hearing loss of his Right ear along with Trisomy 21- Down Syndrome. Despite the challenges Anthony was faced with his family feels truly blessed with he is in their lives. He brings so much light to this world. With all his battles he always has a smile. He had an open heart surgery at one year old. His next surgery in March 2016 was for his Ureter to the kidney and bladder.
Anthony is a beautiful angel sent touring joy to all he meets. His smart and communicates by using sign language. He loves music and being read too.
CHARGE syndrome, Tetralogy of Fallot, multiple heart surgeries
Avery was born with CHARGE syndrome (coloboma, heart defect, atresia choanae (also known as choanal atresia), retarded growth and development, genital abnormality, and ear abnormality), a genetic disorder.
Since her birth Averey has had open heart surgery, g tube placement surgery, cartdiac catheterization surgery, extended hospital stays and many hospital and doctors visits. She is such a sweet angel and is such a blessing to her family. Averey keeps her parents busy with visits to her GI specialist, Cardiologist, physical therapy, occupational therapy, blind babies foundation. Despite her struggles Averey continues to be strong and joyful through her long and challenging journey.
Camdyn Grace is an Age 8 1/2 heart warrior! Even in the midst of difficult circumstances, she still knows how to smile and make others do the same. She can light up a room with her sense of humor so quickly, and her courage and grace under pressure is apparent and inspiring. Her parents are so proud Camdyn is their daughter. She doesn’t let fear overcome her or keep her from trying new things, or from trying to keep up with kids who are free of health concerns. She has her faith placed in her Creator and knows that He created her for the purpose of glorifying Him, and her sweet, cherished life does just that. She is proud of the scars she wears because she knows how precious that makes her life.
Diagnosis: HLHS (Hypo-Plastic Left Heart Syndrome: she lives with only a right ventricle) 3 Open Heart Surgeries, 5 other heart-related surgeries/procedures Open Heart Surgeries at ages 4 days old, 5 1/2 months old, and 5 1/2 years old
Hypoplastic Left Heart Syndrome
Kole is an energetic, fun loving 6 year old who has a blast playing with his Nurf guns! He is a fan of hunting and like we mentioned… NURF! Apart from being the cutest little man ever- he might just be one of the strongest too. He has overcome some major obstacles and is currently soaking in all life has to offer!
Kole was diagnosed two days after he was born with hypoplastic left heart syndrome and had his first of four open heart surgeries at a week old. After his last surgery when he was 3, his body was in rapid decline. Valley Children’s sent his family to Stanford in hopes of more options for Kole. Specialists at Stanford said Kole would need a heart and lung transplant, and that his odds of surviving were not good. The other option was putting Kole on a medical trial for a new medication. This treatment had not been used by Stanford on any other children so Kole became their pioneer.
His team of doctors were able to stop the continuous infusion pump he had been wearing since he was three. That was a medicine that helped relax his blood vessels, and also helped regenerate new ones. They also started a new medicine to see if he is able to sustain with this new regiment.
For the first time Kole was able to go to a water park. His mom shared with us that you don’t realize how much you can’t do when you have a machine attached, until it’s all of a sudden not attached. He was able to act like a normal boy! No one gave him side eye because his mama was holding a plastic packaged pump. And no one asked him why he had to wear it, or what was wrong. He just got to play!
Kole and his family are taking life day by day. Kole is still not in the clear but he is hopeful. Kole really wants to play soccer this fall but it is all depending on the results from his upcoming tests to see his progress.
Paisley was born with Congenital Complete Atrioventricular Heart Block on October 1, 2015. She has been a warrior from day one! She loves her brother and thinks he is the most hilarious person on earth. She had her pacemaker put in July 29, 2016 when she was a little over 9.5 months old. She has been on the recovery road since coming home and her parents can already see a huge change in her face as well as her activity and energy level. She now is crawling all over the place and exploring her home without getting tired. She loves everyone, but is very attached to mama. Her favorite words are mama, dada, bubba, and “Uh Oh”.
Congenital Complete Atrioventricular Heart Block
Cooper was born on February 28, 2013 with Congenital Complete Atrioventricular Heart Block. From day one he has been full of life and all boy, anything round to him is meant to be thrown from apples to oranges. He is determined to play baseball for the San Francisco Giants, his favorite player is Buster Posey. He loves all animals and loves to visit the zoo as much as possible. With his slower heart rate, his body tolerates it very well, we are praying we can get him as big as possible before his pacemaker is needed and can then be transvienously placed. He lives life to the fullest.
Darrell is 2 1/2 years old. He was born with four congenital heart defects and had his first open surgery at 9 days old. During recovery he went into cardiac arrest and was put on life support and he almost didn’t make it. He had his second open surgery at three months old and did great. Due to signing so much time in the hospital since both Darrell never learned to eat so he also has a Gtube. He’s behind on speech, and many more milestones but none of that held him back. He’s one of the happiest kids anyone will ever meet. He loves his 3 older brothers and can keep up with them with no problem. His parents say Darrell is their heart warrior, hero, and superman of their family. He’s taught his family that being strong is the only option.
Davey Jean is almost 3 years old and is one of the happiest and most outgoing little girls. She loves to meet new people, make new friends, and give hugs. She enjoys going to the zoo, trampoline and gymnastics class, swimming and eating. This little peanut has the best appetite ever, and will eat virtually anything. Her demeanor and laugh is additive and it’s hard to not fall in love with her. It’s hard to believe that she suffers from a number of medial challenges including having had an open heart surgery, hearing loss, low muscle tone, poor eye sight, and is non-verbal. She has picked up sign language so well though, that there is no questioning what she is trying to communicate. Davey Jean amazes her loved ones every day and is definitely a hero and warrior in their eyes!
Davey Jean has 22q11.2 deletion syndrome with Tetralogy of Fallot and Absent Pulmonary valve syndrome and has had multiple surgeries, but only 1 open heart surgery so far, to correct her heart defects, which was at the young age of 11 weeks old. She is currently living without a pulmonary valve and will need it replaced in the future, but when that time is, nobody knows except for Davey’s body. Until then, her family will enjoy every single second with her and cherish all the moments and memories we get to make with her.
Grayson was born with a congenital heart defect that was not found till he was 3 1/2 months old. After a trip to the Valley children’s emergency room it was found that Grayson was in congestive heart failure, failure to thrive and that he had an enlarged heart. He had lifesaving open heart surgery 3 days later to patch a ventricular septal defect and an atrial septal defect. At his one year post-operative cardio appointment Grayson was found to have a dilated aortic root. At this time it is being monitored for growth. He may need another open heart surgery in the future. Grayson has some sensory and eating issues. He also has febrile seizures and central sleep apnea.
Grayson is one of the happiest little boys and loves to smile, laugh and play. He loves cars and watching movies. He also loves to play with his two older big brothers. His family thanks God every day for their brave little heart warrior!
Julissa is an energetic 8 year that’s so full of life and dances to the beat of her own drum! She was born with Tetralogy of Fallot and has had two open heart surgeries. Her first open heart was at 8 weeks old and her second surgery was a week before her fourth birthday. Julissa has never let her medical issues hold her back! She was in Ballet, Folklorico and just recently took on soccer. She is the true definition of a warrior because every day she chooses to fight.
Julissa is winning the battle against CHD with every heartbeat and with every day choosing to smile and every day choosing to love. Her love for her pets and all of the people in her life is truly immeasurable. Her smile will brighten any ones day and she radiates an energy that is good for our soul. She is daddy’s little princess and mommy’s brave warrior!
Double Outlet Right Ventricle, Transposition of the Great Arteries, Pulmonary Stenosis, a Ventricular Septal Defect, PDA and PFO
Makenna is a heart princess warrior! She was born fighting for her life; undergoing her first heart surgery at only 32 hours old. That is when her family learned that she was born with complex congenital heart defects: Double Outlet Right Ventricle, Transposition of the Great Arteries, Pulmonary Stenosis, a Ventricular Septal Defect, PDA and PFO. She went on to have her second heart surgery at 5 months old and third at 14 months old. She will need heart surgery sometime in the future to replace a donor valve, but she is growing and thriving! She may have been born fighting for her life, but she is now busy living life to the fullest! She loves helping others, dancing and riding her horse. She has an adventourous spirit and a beautiful heart.
Neymar is known for his outgoing personality, contagious smile, and his sweet and lovable heart. Neymar knows no stranger, he greets everyone with a friendly “Hello!”.
Neymar has overcame many obstacles including: being diagnosed with down syndrome at birth, open heart surgery, endured chemo and survived cancer. He’s spent most of his 2 years of life in and out of the hospital.
Neymar flashes his cheerful smile every chance he gets, he loves going to preschool. His Favorite food is pizza and rice. He’s in love with balloons- or anything round that looks like a ball. Cookie Monster’s his buddy. Neymar loves to Dance the Chacha slide, bust a move to any of Pitfall’s jams, and he loves singing along.
Tess is a spirited five year old who is currently attending first grade. She has a love for learning and meeting new people. Tess taught herself how to ride a bike without training wheels and on daily basis, does her best to be a good influence and help to her two younger brothers.
Tess was born with Tetrology of Fallot with Pulmonary Artresia and MAPCAS. After perfect APGAR scores her CHD was detected by a simple pulse oximetry test. She was days old with her first open heart surgery, 6 months with her second and 18 months with her 3rd. Outside of her scars, nobody would know all she’s been through.
Tess and her brothers have been motivated enough to raise more than $10k for children’s hospital by asking for donations in lieu of gifts on their birthdays. Tess also was thrilled to serve as this year’s special guest at the American Heart Association Heart and Stroke Ball where she got to dress up, meet new people, share her story and dance.
Tess likes to brag that her favorite super hero is Iron Man, because he has a “special” heart like she does. Her favorite activity is swimming. She often changes her career goals from being a firefighter like her dad, a princess, Doctor or an Olympian. Approaching six years old, it is so hard to believe all this little girl has been through. She has enriched many lives around her. She will always be her families little warrior, no matter how old she gets or what profession she chooses. She is adored!
Venus is a sweet little girl who loves jewelry, painting her nails, baby dolls and her brother and sister. She was born with VSD and PDA. At one year of age she had her first heart surgery at Stanford. Venus, along with her family, have all been diagnosed with long QT, a serious arrhythmia condition that can lead to heart failure and sudden death. They are the 4th family on record to have this diagnosis. It’s considered a rare disease. There are over 7000 rare diseases in the world and 95% have no cures.
Venus and her family have traveled to Stanford every six weeks since January 2016. On May 13th, Venus hade her first attack and fainted in our living room, this is a very bad thing with people living with LQT8. She was transferred from Kaweah Delta Hospital to Stanford by ambulance. She then had an ICD placed to protect her heart. When they saw her heart they noticed her right side of her heart was very thin and hade a lot of scaring, and was white in color. They had never seen this in someone so young before. The next step for Venus and her family is to travel to Children’s Hospital in Colorado to meet with specialists. We have a long road a ahead of us but we know that with God beside us nothing is impossible!
Victor is 4 years old and was diagnosed with Hypoplastic Left Heart Syndrome. At 5 days old he had his first open heart surgery “Norwood”. During that stay at the hospital he ended up having a minor surgery to get his g-tube in place. His second open heart surgery was at the age of 7 months “Glenn”, he is currently awaiting his final surgery “Fontan”. Throughout Victor’s short 4 years of life he has not once let his condition stop him from being who he is. He is a normal child that’s full of energy and brings a smile to everyone’s face.
Victor is a funny, loving, energetic little boy that has not only brought so much joy into his families lives but has also showed them what the true meaning of life is. He is very proud of his “Big Heart” and makes sure to show it off as much as possible. Although Victor, like many other little warriors, fights for his life every day he never complains about anything and enjoys every day and makes the best out of it.
Transposition of the Great Arteries
Weston is a very energetic two year old who loves to climb, play and is full of energy. He brings so much joy to all of his family. He loves his brother and sisters who adore him and do whatever he says. He likes to count to ten and he tries to say the alphabet. He is very outgoing and says hi to anyone he meets and loves kisses from mommy.
Weston was born with a heart defect called transposition of the great arteries. At hours old he had a procedure called atrial septostomy that made a hole in his heart to keep him alive until his open heart surgery at four days old. He has a slight stenosis and a leaky valve witch is normal for his heart defect. He will be monitored his whole life by a cardiologist. You could never tell he has a heart defect by the way he keeps his mom and dad on their toes.