Kids With Heart is a program that recognizes young, local heart and stroke survivors who serve as ambassadors for the American Heart Association (AHA) and inspiration for us all. These stories encourage others to participate in Kids Heart Challenge and Hoops For Heart, thus helping the AHA build healthier lives, free of cardiovascular disease and stroke.
Alaska Kids With Heart
Meet Otto Xavier OlsonOtto was born with a congenital heart defect (CHD) called Supra TAPVR. At only 18-hours-old he had lifesaving open-heart surgery. For the first two weeks of his life Otto was in the hospital. Until he was 2-years-old Otto saw his pediatric cardiologist weekly, then monthly, then yearly. Now he only needs to visit his cardiologist every two years and is healthy, just like other kids his age. He loves school, playing with his friends, participating in Boy Scouts and riding his bicycle. To stay healthy he eats a diet full of fruits, veggies and heart-healthy fats. He also drinks a lot of water and stays active to keep his special heart strong. Otto stays involved in CHD awareness by telling his story to others and participating in events like Heart Walk and Kids Heart Challenge. By raising awareness and support for CHD research, he is helping other children and families with hearts like his.
Arizona Kids With Heart
Meet Austin LugoWhen Austin Lugo was 5 years old his pediatrician heard a heart murmur at a wellness exam. It was recommended that he see a cardiologist who continued to monitor him. Austin developed a growth/membrane in the chamber that leads to his lungs. The growth grew, causing a valve to leak. In June of 2016, at only 8 years old, Austin went into congestive heart failure and required open-heart surgery due to subaortic stenosis. Thankfully Austin is now on the path to a complete recovery. His parents tell him every day that his heart was so big and full of love that it needed to release to share the love with others.
California Kids With Heart
Meet Alivia GardnerAlivia was born with hypoplastic left heart syndrome; meaning the left side of her heart was underdeveloped. Luckily her parents and doctors knew this before Alivia was born and were able to take measures to keep her as healthy as possible. She has had four open-heart surgeries and nine cardiac catheterizations.
Alivia’s favorite thing to do is color and paint. She likes to use watercolors and paints many pictures for her mom and dad. Alivia’s parents have experienced the lifesaving research of American Heart Association funded researchers firsthand. They know how important this is in saving little hearts like hers.
By participating in events like Kids Heart Challenge, Alivia brings awareness of the many ways the students, parents and teachers at her school can help children with heart defects.
Hawaii Kids With Heart
In August 2011, Ihilani’s older sister passed away from a heart problem. At the time, her family didn’t know what caused it and the doctors could only say that her heart stopped working. Ihilani and the rest of her family were tested for any heart problems. Ihilani and her 2 brothers were diagnosed with heart defects similar to, but less severe than, their late sister’s. Ihilani has to go to the doctors once a month to make sure that he heart is working right.
Ihilani’s brothers also need frequent checks up but both of them can play football and baseball. Ihilani loves cheerleading. Their mom knows how important it is to keep everyone’s hearts healthy and is so good about getting everyone to checkups.
When Kendra was 15 months old she fell ill with a high fever that was resistant to Tylenol. Her lymph nodes in her neck were also swollen so severely that she could not turn her head from side to side and she refused to walk. Her symptoms persisted over the weekend and on the 5th day she woke up with bright red swollen, cracked, and bleeding lips. Her symptoms also included a "Strawberry" tongue and swollen hands and feet.
We rushed her to her pediatricians’ office where he believed right away that she was suffering from Kawaski Disease. He was unable to treat her and she could only be treated at Kapiolani Hospital in Honolulu which was a 45 minute airplane ride away.
Kendra's pediatricians’ suspicions were confirmed, after a plethora of tests over a 24 hour period to rule out all other possibilities. Kendra was treated and diagnosed with Kawasaki Disease. She then began an IV treatment of adult antibodies (IVIG) for 48 hours.
According to the Kawasaki Disease Foundation, "KD is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Without treatment, about 25% of children develop heart disease involving the coronary arteries. Doctors continue to study the long-term outcome of children who do not appear to have coronary involvement".
Luckily, Kendra was treated early and had no significant damage to her heart. However, she continues to see a specialist regularly to keep a close watch over her heart. KD is rather common in the Hawaiian Islands as opposed to other areas nationally. The reason for this is unknown, and this is what motivates the Ryan family to continue to push for advancements towards testing.
Meet KyleyKyley was born with a broken heart. She had coarctation of the aorta and a bicuspid leaky valve. When she was 3 months old she ended up in the NICU with respiratory syncytial virus. This is how the doctors learned about her heart condition. Kyley has had 2 open heart surgeries to correct her heart defects. She still has a leaky valve and her aorta is starting to narrow so she has to have yearly checkups. She tries to stay positive, happy, and heart healthy.
Idaho Kids With Heart
When Paxton Smith was seven, he got really sickand had to go to the hospital. Paxton was diagnosed with Kawasaki’s disease which caused his coronary arteries to become enlarged. He had to take different medicines daily and have echocardiograms every few weeks. Paxton felt sad and didn’t think people would want to play with him because he had a bad heart. All the medicine and testing were very scary for Paxton and he couldn’t do anything, like sports or exercise, that would put stress on his heart. After months of testing and lots of medicine, Paxton’s scans came back clean. His heart had healed! He still needs yearly tests to make sure that everything is okay but he is able live an active and normal life.
Meet Aidan Jonz.Aidan was born with holes in his heart. For his first months of life he was very sick. At 2-months-old Aidan needed surgery to repair the holes in his heart. During surgery, Aidan suffered a stroke causing the right side of his body to become weaker than the left. He has worked very hard in speech therapy, occupational therapy and physical therapy to get stronger. Aidan wants kids who have heart problems or who have had a stroke to know that they can do anything! That they can be warriors just like him.
Meet Elias Chistensen. When Elias was two days oldhe was diagnosed with VACTERL Syndrome. He had a hole in the center of his heart called an AV canal. It caused Elias to have congestive heart failure. He needed to take many medications and his growth was stunted. When Elias was six months old he had open-heart surgery to repair the hole in his heart. Three days later his heart stopped beating correctly and he needed another surgery to put a pacemaker in. Elias developed pulmonary hypertension and had to be on oxygen for seven months. At five-years-old Elias’ heart rate dropped and he had to have his pacemaker moved to a different spot. Every three months Elias has his pacemaker checked to ensure it’s working properly. Elias loves to play but he often needs to stop and rest due to chest pains. He wants everyone to be happy and if they have heart problems, he wants them to be brave.
Meet River Blake-Roberts. River was born with
pulmonary atresia. Immediately doctors knew something was different about him. Within the first few hours of his life, he was life flighted to a neighboring state and spent 28 days in the hospital. At nine-days-old, he had his first heart surgery to put a BT Shunt into place. River has also suffered two mild strokes that affect the right side of his body and mind.
Though he has had to overcome many obstacles, he still manages to have one of the most clever and witty personalities. He loves Sonic the Hedgehog and can tell you endless facts about his favorite superheroes. River has been a great reminder to everyone around him that anything is possible and to never give up.
Meet AaronAaron was born with a severe congenital heart defect called HLHS. His parents had to move to another state so that a special team of doctors and nurses could work on his heart and save his life. Aaron’s mom says that he had surgeries at 4 days old, 4 months old, and 3 years old. He is now 5 years old and doesn’t really remember the times that he had his surgeries. He is proud of the special scars that are on his chest. They show how brave and strong he is, like Superman, Batman and Spiderman. Aaron loves his hospital and misses his doctors. They take great care of his heart to this day.
Colter was born on November 17, 2011. He was taken home 24 hours after he was born, he had passed all of the health screenings and was a healthy baby boy. Unfortunately, the hospital had neglected to complete Pulse Oximetry Screening.
Three days later at his first checkup the doctor heard a very loud murmur and chose to check his oxygen levels, which were bad. A normal baby should be above 95% and Colter was at 75%. He immediately made arrangements for us to see a cardiologist. Five hours later Colter's parents received the most terrifying news they have ever heard in their lives. Colter was diagnosed with a severe and rare critical congenital heart defect called Truncus Arteriosus. Without surgery to repair his defect he would die.
At eleven days old, Colter underwent open heart surgery at Seattle Children's Hospital that was supposed to take 6-8 hours but, because Colter had suffered a cardiac arrest, it wasn't until fourteen hours later that Colter was stabilized. However, he was still surviving minute to minute. During the next two weeks, Colter was barely surviving facing infections and last ditch efforts by the doctors.
Luckily, by the grace of medical research, Colter began to improve and was discharged from the Children's Intensive Care Unit. He remained in the hospital for another month on antibiotic treatment. When Colter was finally able to go home, he had a feeding tube, full-time oxygen and a long road to recovery. His cardiologist said if he didn't improve a heart transplant would be needed.
Happily, Colter is thriving today! He is as crazy as any other two-year old and just recently became medication free. Colter will need at least 3 more open heart surgeries, numerous catheters and constant monitoring throughout his life. His family doesn't worry about the future and enjoys today and the moments we have right now knowing that through research and medicine, Colter can and will have a healthy quality of life. Please help spread the word that nearly 1 out of every 100 births a baby is born with some form of heart disease. Heart disease is the #1 killer of our babies, not to mention that babies are twice more likely to die of a heart disease than all forms of childhood cancer. Heart disease doesn't discriminate; ask for your baby’s oxygen levels to be checked before you leave the hospital. Know the signs--if your baby has a bluish tint to the skin, fingernails or lips, fast breathing, poor feeding, poor weight gain, fatigue, poor circulation and excessive sweating--those are all signs of a possible heart defect.
Isaac was born with a congenital heart condition called Tetralogy of Fallot. Soon after he was born, Isaac was flown to a larger hospital where he stayed for a whole month. He had a heart catheter and open heart surgery to connect his heart to his lungs. When Isaac was 8 months old, he had to go to Stanford to have the hole in his heart repaired as well as to replace the valve and conduit. They also rerouted a lot of vessels that supply his lungs with blood from his heart. The surgery took over 9 hours! Isaac is blessed with a great family and lots of friends that pray for him each time he has a surgery. Isaac can now run and play without getting too tired and is proud of the “zipper” on his chest. He keeps his heart healthy with exercise, good diet, and lots of water. He’s grateful for all of the nurses and doctors that care for him and keep his heart healthy.
Meet AlexiaBefore Alexia was born, doctors informed her mother that Alexia had a congenital heart disease. At first the doctors said it was life threatening because Alexia had a lot of fluid backed up in her heart. As time went on the doctors determined that Alexia would make it to full term. Alexia was born with 100% oxygen so she was able to go home without heart surgery. At 6 months old, Alexia’s cardiologist determined it was necessary to repair her tetralogy of Fallot. The surgery was successful and she recovered in 5 days! She needed another surgery to stop leakage in her heart. Another successful surgery! Alexia still gets tired easily and needs to rest a lot but is otherwise healthy and happy! Her parents tell her that she can do anything she puts her mind to so long as she knows her limits and stays healthy. She gets to do plenty of things like other kids with normal hearts can do.
Meet BrodyWhen Brody was 10 days old, he was diagnosed with pulmonary stenosis and aortic insufficiency. Brody’s brother also has pulmonary stenosis. When Brody was 4 months he had to have a cardiac catheterization followed by emergency open heart surgery. Since then, Brody has had 4 more cardiac catheterizations and in 2015 Brody had another open heart surgery to replace his aortic valve. Brody was very scared because he thought he might not make it. After his surgery, he stopped breathing and his doctors saved him. He was able to go home after 5 days and has been healing ever since! He is no longer on heart medication and his doctors say his heart looks great! Brody will eventually have to have more surgeries and he is nervous but hopeful. Brody’s heart is broken but it’s still beating and Brody’s so tough because of what he’s been through!
Meet DevinOne month before Devin was born, doctors told his mom that Devin had 3 holes in his heart. After Devin was born, he was also diagnosed with Down Syndrome. When he was 4 months old he had open heart surgery to repair the holes in his heart. The surgery was successful and Devin hasn’t had any other issues with his heart! He’s growing big and strong and loves school and batman. He takes part in the Special Olympics and hopes that all the money he raises helps to save lives so all kids can grow big and strong.
Meet AliceAlice was born with a CHD called AVSD (Atrial Ventricular Septal Defect) meaning she had 1 big hole in her heart leading from the top to the bottom. She had surgery at 2 months old to repair it and a pacemaker placed about 2 weeks after that. During the first 4 years, she had a normal life, played had friends, went to play dates and just about anything a 4 year old would do. Shortly before Alice turned 5 she collapsed during drop off at preschool. She was taken by ambulance to Doernbecher where they figured out her pacemaker lead had fractured, and they needed to repair it fast. During this time, Alice coded and they needed to do 4 rounds of CPR to bring her back. All the CPR messed with the natural rhythm of her heart and created other problems. Despite all this, Alice is now and amazing and vibrant 6 year old.
Meet LucyWhen Lucy was 6 months on her mom took her to the doctor because she was really small and cried a lot. When Luc was crying her lips were turn blue. The doctors discovered that she had tetralogy of Fallot. Her heart had a hole in it and the valve going to her lungs was too small so her body wasn’t getting enough oxygen. This was causing the headaches that were likely the cause of all the crying. Lucy had surgery to fix the hole in her heart when she was just 6 months old. Lucy’s mom said that Lucy started to feel better right away. Lucy still has to go to the doctor every year to check on her heart but she just like other kids her age.
Meet MirandaMiranda was born with hypoplastic left heart syndrome which means that she’s missing the left side of her heart. There are 3 surgeries necessary to fix a heart like Miranda’s. She had the first one at 7 days old, the next one and 6 months old, and the 3rd one when she was 4 years old. When she was 6 years old she started having problems and developed protein losing enteropathy. She had to have another open heart surgery to correct the problem. Most days Miranda feels fine but others she gets tired easily. She loves to be active and has done dance, gymnastics, softball, and swimming. She loves to roller skate, do arts and crafts, and girl scouts! Miranda prays that all kids with congenital heart diseases have the same happy results she has. She lives life to the fullest one day at a time
Meet SinaSina's congenital heart defect was discovered when she was only 6 months old. Her defect is called Atrial Septal Defect (ASD), which is the hole in the heart wall that separates the upper chambers of the heart. Sina received her live-saving heart surgery in 2012 at just 2 years old and is a happy healthy little girl today.
Sina's family is incredibly grateful for their community of friends and family. They would like to thank everyone from the bottom of their hearts for their support, well wishes, hugs, and prayers.
You can read more about Sina's journey here.
Meet SuttonSutton’s heart defect was detected in utero and doctors carefully monitored his mother throughout her pregnancy to measure the growth of Sutton’s heart. The doctors suspected that Sutton had hypoplastic left heart syndrome and they took him straight to the NICU after birth. Sutton’s heart was working and he showed no signs of stress so the doctors waited until he was 8 days old to place a heart catheter. Sutton’s aortic arch was too narrow and needed to be opened. Sutton started to get very sick and it was clear that the doctor’s needed to operate soon. When he was 14 days old, Sutton underwent 8 hours of surgery. This surgery wasn’t a cure – it’s just a fix. Sutton developed a sub aortic membrane and his aortic arch began to narrow again. He will need at least 2 more surgeries at some point to correct these issues. He knows that he has to eat healthy and exercise even though he does have some physical restrictions. He loves all sports and his hip hop dance class. Sutton wants everyone to know that he’s just like all the other kids – just with a cool scar!
Kyler was born in 2007 with a severe heart defect called Hypoplastic Left Heart Syndrome, which means he was missing the left side of his heart. He had his first open-heart surgery when he was less than a week old! After his second open-heart surgery, young Kyler suffered two strokes. He survived and endured three additional open-heart surgeries.
Kyler’s parents were told not to expect him to walk, talk or eat on his own, but Kyler has definitely defied the odds! At age 3, he learned to walk and after that, the rest of his development just seemed to come naturally. He started school in an adaptive kindergarten class and by Christmas he was ready to transfer into a regular kindergarten class!
When Kyler was 8 years old he started suffering from severe edema caused by protein losing enteropathy and doctors determined he needed a heart transplant. He was placed on the transplant waiting list in November 2016 and on March 25th, 2017, his donor heart was placed in his chest and was beating on its own. Today, Kyler and his family are truly grateful for his gift of new life.
Meet LucaWhen Lucas was born he immediately turned blue. It was determined that Lucas would be flown to a children’s medical center where they discovered that he had transposition of the great arteries. At 6 days old Sutton had open heart surgery and was in the hospital for almost a month. Sutton went home with a feeding tube, a PICC line, and a lot of medications until he was fully healed. Sutton feels very lucky to have only required one surgery. He sees a doctor every other year and has to be careful about which sports he plays. He loves having a “zipper” scar to show everyone.