Lily was born December 1st 2020. We first found out about one of Lily’s heart defects at her 20 week scan. I sat there with a mask over my face, no support in the room other than a specialist while my husband waited in the parking lot due to Covid protocol. I remember not retaining any of the news. I couldn’t speak or stand. I was in complete shock. After a complicated pregnancy Lily decide she didn’t want to grow in my body anymore, so it was time to get her out at 37 weeks. We actually came a long way from what the predicted. Lily went through it all from having her chest open for 10 days to trying every heart medication they had to regulate her heart rate. She was intubated for 3 months. She had been poked and prodded daily. And as hard as all that was, Lily was so strong, so brave through it all. Not many kids smile in her situation but even intubated she would smile at people. She was always very aware of anyone who entered the room and would follow them with her eyes the whole time. Now my little girl is 3 years old, her heart doing fine despite a few other health conditions. But I often wonder if what her cardiologist had heard when she was born was the coarctation. Could we have known sooner and taken steps sooner to where she wouldn’t have been walking the line of death? Was there just not enough information available or was it simply an error on their part? We will never know. I pray this doesn’t happen to other kids but chances are it will. The world of pediatric cardiology has come a long way but there is still so much unknown. #chdawareness #congenitalheartdefect #chd #chdwarrior #congenitalheartdisease #sweetheart

Meet little Gabriel! From Gabriel's mom, Rina: "this is Gabriel. He is 2 years old. He has complex congenital heart defect (double outlet right ven small right Dom left pulmonary simnosis interrupted ivc avvr etc... just know he has a unique heart. Noone has one like his.) He also has Heterotaxy (his heart a different angle and flipped Midline liver asplenia bowel Malrotation. He is a pretty much a unique guy.) I found out about everything at my 19 weeks check. We was followed by high risk team til birth. After a long Tramatic birth at 1:45 am. My 6 pound 3onz lucky number 4 was born. He was born quiet. 12 mins after he coded they got him breathing and ready to transport. This is when his fight began. He had hie was placed on a cooling treatment. That didn't stop him. He woke up. He got everything slowly taken away. We also found out he had avvr they said he wouldn't have a chance with surgery. He was put on transplant list 2 and had nec 2 times. He finally was put in dormant on the list. He did so well he was able to go home with a ng pulse ox etc. We had one goal at home. Feed him and let him grow. At 5 mo he got a g tube After every illness under the moon 5 different surgery dates. On February 23 2023 Gabriel had his first open heart surgery. He now has collaterals that’ll need to be closed soon. He did have a few set backs but overall did amazing. Now he is enjoying life at home. He is able to do this because of research from organizations like this. This also helps future researchers understand the complexity like a child like mine and help establish further actions sooner." #congenitalheartdefect #congenitalheartdisease #chdawareness #chd #chdwarrior #heartmonth

Happy Heart month! From Elijah's mom, Jessica: "Elijah was diagnosed with a full heart block. Doctors told me that he would not make it and that I should basically terminate my pregnancy but I never did. Elijah was born in November with a full heart block he developed hydrops me and him both had a lot of fluid on each other when Elijah turned one he got a pacemaker Elijah was diagnosed with heart failure. We see two heart doctors every six months one is his regular heart doctor, and the other one is a transplant team Elijah is four years old now Elijah is happy kiddo who just started 3K. He loves going to school as we don’t do much activities because if he gets sick, he gets put in the hospital. Elijah is loving and caring boy he has two sisters one who is older and one who is younger. His aunt has helped us along the way with all of this. She is his best friend and he loves her with all of his heart. Heavenly father is the reason why I can handle all of this with my son he has helped me along the way with all of my doubts, and all of my struggles. I love being a heart mom to my son." #congenitalheartdefect #congenitalheartdisease #chdawareness #chd #chdwarrior

Please meet Andre, with the handsome smile. From Andre's mom, Mollie: "Andre was born with HLHS, and after his Norwood at 8 days old. He was given less than a 5% chance of survival, but he was taken off ECMO after 8 days. His recovery was hard but he was able to go home after 73 days, 3 heart surgeries, 1 diaphragm plactation, and many small procedures. We went in for his pre Glenn cath and his numbers there looked great too. But the minute he woke up from his cath he was irritable and not tolerating his feeds anymore. He was no longer himself and it was passed off as being irritable from the cath and the sedation. We were sent home from the hospital the following day. Finally after 4 days of being at home he had a hearing appointment at the hospital and afterwards I called his team and told them I refused to leave until they saw him. They said that he was constipated and they wanted to monitor him overnight. He was admitted that day, and never left. Once he was in his room they got their labs and got an echo, and it was clear he was in severe heart failure. He needed a heart transplant, every couple of days he was a little sicker. He ended up on a VAD at the beginning of October, the Centrimag and then the Berlin heart. But on December 20th we got the call, he waited 157 days for his gift. His transplanted graft failed and he was placed on ECMO after the transplant. His donor hearts left free wall was paralyzed. At first everyone thought after a few days it would wake up. Slowly it was waking up but not enough. For a month after transplant he had ups and downs. But everyone knew there was no recovering his other organs from the damage they had taken. So on January 20th, at 10:22 AM, I held my boy as close in my arms. I cried and I just told him how sorry I am that this is happening, and that I loved him. And my boy passed away. He deserved so much more than that. He was always the happiest boy with the most contagious laugh in the world, despite everything he had been through." #congenitalheartdefect #congenitalheartdisease #chdawareness #chd #chdwarrior

Calling all parents and caregivers of a child with CHD: We are looking for participants for an epidemiological survey, to gather potential risk factors for CHD's. Click below to sign up! https://www.nsccr.org/contact-the-davenport-project

This handsome little fellow is named Zyair! From Zyair's mom, Giandrea: "28th week ultrasound was the turning point of it all. We found out fetally that he had enlargement of the heart, so we got connected with Luries through our fetal medicine doctor! We had multiple appointments per week to monitor and see if hydrops would develop which means (heart failure in fetus). I remember the words so clear, if this were to happen, we would just let nature play its course. Each week he sailed through those appointments, no hydrops in sight.Zyair was born with tricuspid dysplasia, pulmonary atresia and his aorta valve was welded shut. He’s had 3 open heart surgeries with the last being a Starnes procedure as he’s currently working off of one side of his heart. He has stayed in the hospital majority of his life with the exception of being home twice, once for 2 days another for 3 days before having to return. In November of last year he suffered brain damage due to a blood infection that they suspect traveled to his brain causing seizing for hours. Due to the extent of the damage they’ve diagnosed him with cerebral palsy. We discharged this Dec 12th, 2023 with another readmission for 2 days and made it back in time for a wonderful first Christmas at home. He will be 2 years old in January 18th. God is truly in the business of miraculous healing and we’re believing for all good things! Having more research to us means putting aside the worrying about how it happened and placing blame on oneself. It’s a small piece of the big ole pie, but it’s one that I know of oh so well! Then, it would also help come up with preventatives, since we know that it could be a possibility for anyone. With congenital heart defect research, the trajectory of this disease will change over time allowing for even more effective treatments etc." #congenitalheartdefect #congenitalheartdisease #chdawareness #chdwarrior

Meet Maci! From Maci's mom, Sindi: "Maci April 10th 2017. She appeared to be a healthy infant, until she wasn't. When she was 5 weeks old, she was brought to the local Emergency room for rapid breathing. She was brought back to a room immediately. After a chest x-ray showed a severely enlarged heart she was transported to the children's hospital for further investigation and suspicion of a Congenital Heart Defect. At the children's hospital an echo confirmed she had a heart defect but would need further testing to confirm. She decompensated quickly and was taken to the trauma room, she was in Cardiogenic Shock. She was then sent to the Pediatric Intensive Care where she was intubated and shortly after taken for a CT scan to confirm her diagnosis of Anomalous Origin of the Left Coronary Artery Arising from the Pulmonary Artery or ALCAPA for short. The next morning Maci was life flighted in critical condition to Toronto Ontario to the Hospital for Sick Children to have her defect repaired. Her surgery was cancelled two days in a row due to collapsed lungs and an infection. It was decided on day three that she could no longer wait, and she was taken to the OR for an 8 hour surgery which required bypass, and subsequently two attempts to get her off bypass. Once back in the cardiac critical care unit she had a rocky recovery, open chest, prolonged ventilation, and severe arrhythmias which required both medical and electrical cardioversion. After four weeks in Toronto, Maci was sent back to Halifax Nova Scotia to the IWK children's hospital to complete her recovery, which was a mix of the regular medical ward and Intensive Care to get her heart rate under control. Maci is now 6.5 years old. She is considered to have normal heart function with slight regurgitation in three out of four heart valves. She sees her cardiologist on a yearly basis and is currently medication free. ALCAPA is currently a heart defect that is not able to be detected in utero, due to fetal circulation. Even though ALCAPA is not diagnosable prenatally, there are many CHDs that can and are too often missed, due to lack of education, lack to proper equipment and research."

Our goal is to expand research effort for #chd patients. #congenitalheartdefect #congenitalheartdisease #WeHeartResearch