Every year, 100,000 babies don't make it to their first birthday because of CHD.
chd, chd support, congenital heart disease

Our Heart Warrior of the Week is Jude Elliot Hayes, who was diagnosed with Truncus Arteriosus Type 1 at 23 weeks gestation. Jude was born on March 27th, 2017 and has already made a lasting impact on his parents and the World itself. This is Jude’s story, as told by his Mom, Courtney.

Before Jude, we lost 4 pregnancies in a row, including our “Hail Mary” IVF/genetic testing attempt. We were told we would not lose that baby because we had done everything right, yet we still did. Even the doctors were stumped. We let go of our dream of having biological children and began to pursue another dream…adoption. In the middle of our home study, I found out I was expecting Jude. Due to my high-risk pregnancies, I knew the odds were stacked against us but I had a gut feeling that this one would make it; it felt so different from any other pregnancy I had. I truly believed deep down that I would finally get to hold my baby. Here we were, giving up on having a biological child, not actively trying to get pregnant, and I wasn’t wrapping myself in a protective, fertility-friendly bubble like I did for the past two years to ensure a healthy pregnancy… and then Jude’s little heart started beating. And unlike my other pregnancies, his heart never stopped. Even when I delivered him, his little broken heart stayed strong and steady through the whole process. He was the little embryo that could. He stuck around because he had something to give to this world.

Jude was my 5th pregnancy, he was unexpected and had a lot of odds against him from the beginning. After we passed 12 weeks, I started to breathe a little easier and believed that I was going to meet my “rainbow” baby. When we found out about his heart diagnosis and possibility of 22q.11 deletion syndrome, I was devastated. I felt I had earned the right to an uncomplicated pregnancy and a happy ending, and yet I feared I would lose my son. I struggled off and on until the day I had him. I battled so many feelings of bitterness, jealousy and depression. Jude was supposed to be my redemption; it wasn’t fair he was sick. Why did everyone else get to have healthy babies? All I did was think about me. How his diagnosis would make me feel…what it would do to me. And then he arrived and everything changed. Nothing is about me anymore. My life exists to make sure he is happy, safe, healthy and loved. He is the first thing I think about in the morning and the last thing I think about at night. He makes me so happy.

To be honest, I was afraid I wouldn’t love him and that I wouldn’t be a good mother. I was scared of his diagnoses and the unknowns they brought along with it. In particular, 22q.11 deletion syndrome scared me and consumed my thoughts. However, Jude has once again proven he was always meant to be. I didn’t think it was possible, but my broken, battered heart has been healed by him and his broken heart. I feel whole again and I can say with certainty that Jude WAS my redemption. In fact, I think he has been the redemption for so many. He has given hope to those struggling with infertility, pregnancy loss, in-utero diagnoses, and so many others. He has such a following and his smile has warmed over the hearts of friends, family and strangers from near and far. This boy is so very special and I can’t wait to see his story unfold.

Jude inspires me because he has had all kinds of odds stacked against him. He wasn’t meant to be here. I expected to be in the hospital for at least a month, but Jude kept exceeding expectations and we were out of the hospital 11 days after he was born, just 8 days after his open-heart surgery. He has been poked and prodded so much, but he just seems to love life. He is always so bright-eyed and curious. He loves to smile and take in the world. Don’t get me wrong; he protests when he is at the doctor and makes it VERY known he is unhappy, but I like that about him. He has a fight in him and I think that is why he has made it. Jude has fought and won so many battles in his short life, yet he isn’t bitter or jaded like I was for so long. I believe he was given to me to remind me to live like him despite all the challenges that nearly broke me, and that is why he inspires me.
Our biggest worry is making sure we are doing all we can to ensure he lives a long, healthy life. That involved uprooting our lives for a few months so that we could have his surgery at the Children’s Hospital of Philadelphia. As we go through our daily routine, I have moments that I forget he has CHD or a genetic syndrome, but then there are days where there are endless doctor appointments or we receive bad news, and it all comes crashing down again. I try not to let my mind wander too much, but I know deep in the very back of our minds, we fear losing him. We don’t want to raise him in fear, but the reality is that it is a possibility. And that scares me to my very core. I would give anything to just let go and not wonder how many birthdays we will celebrate with our son. But at the same time, maybe that allows us to appreciate the time we do have, a little more than we otherwise would. Every single day with Jude is a gift.

Jude underwent his first open-heart surgery at just days old. This surgery involved separating the pulmonary arteries from the first part of the aorta, connecting the right ventricle to the pulmonary artery using a graft from human cadaver tissue, and closing the ventricular septal defect with a patch so that the aorta rises solely from the left ventricle. Jude spent 11 days in the hospital after being born and has had countless outpatient appointments since his release.

He will have to undergo two more procedures on his heart with the possibility of even more in the future. This little fighter will also have a cleft palate repair, tubes placed in his hears and a hernia repair as a result of his 22q.11 diagnosis.

As Jude grows, he will face restrictions when it comes to sports, he will be unable to participate in any contact sports, but his family is hopeful he will be cleared to do other outdoor activities. As of right now, he does not face any other restrictions and they are hoping it stays that way. He is a fighter, a miracle, a warrior, an inspiration and a gift.

Jude’s Diagnosis…truncus ateriosus, chd, congenital heart disease

Truncus Arteriosus Type 1 is a rare congenital heart defect in which a single blood vessel stems out from the left and right ventricles.  In a normal heart, there are two separate blood vessels arising from the ventricles – the pulmonary artery from the right ventricle and the aorta from the left ventricle.  As a result of this abnormal anatomy, too much blood is pumped to the lungs, causing extra fluid to build up which makes breathing difficult.

If left untreated, the blood vessels to the lungs become permanently damaged. Over time, it becomes very hard for the heart to force blood to them. This is called pulmonary hypertension, which can be life-threatening. Symptoms of Truncus Ateriosus include:

  • Bluish skin (cyanosis)
  • Delayed growth or growth failure
  • Fatigue
  • Lethargy
  • Poor feeding
  • Rapid breathing
  • Shortness of breath
  • Widening of the finger tips

Comments

Gina

Gina said:

My son has Truncus type 1 also. These are miracle babies. God bless Jude and god bless you. Just remember you are not alone :)

Julie

Julie said:

Courtney, I am so pleased to read this article and how your love for Jude has only grown stronger and into a unconditional mothers love. You deserve Jude and he deserves you
Here’s to our TA heart warriors ❤️

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