Jude has a very unique heart, his condition is called Hypoplastic Right Heart Syndrome.
Hypoplastic Right Heart Syndrome (HRHS) is a condition that is even more rare than Hypoplastic Left Heart Syndrome (HLHS). HRHS refers to the underdevelopment of the right side structures of the heart, which means that the chambers, valves and related blood vessels on the right side of the heart are malformed. This malformation involves the pulmonary valve atresia which has not formed, a very small right ventricle, a small tricuspid valve and a small hypoplastic pulmonary artery. As the ventricle has failed to grow and develop the ventricles muscle structure is poor, so additional problems are encountered as the heart attempts to pump blood to the pulmonary valve for transfer to the lungs. The proper amount of blood pumped from the right atrium is not sufficient and this causes the blood to be not pumped efficiently to the lungs.
He has a complex heart and his oxygen is not so good, so he is limited to his playtimes, his running, and we often have to stop him from playing because he will start to turn blue and purple. This is hard for Jude because he wants to always play like his older brother and looks up to him and tries to do the same things as him. He will have to live a restricted life in order to keep his oxygen to his normal range.
Jude is also having a hard time gaining weight, he has been on a GTube (feeding tube) most of his life; we are teaching him through therapy how to eat solid foods, how to swallow and to even just drink without choking. He has gotten so good at it that we no longer use the tube in him, but still have it there for future access (his third surgery).
Jude had his first open heart surgery in October of 2014, then had his second open heart March of 2015, and we await for the third open heart surgery this year. His heart will never be a full working heart, but doctors are confident that they can work with what he has and his oxygen should improve.
As a mom, I’ve become an emotional mess with all of his surgeries but when I look at this little fella, he is so so brave and does not fear anything. He thrives so well, and recovers so fast. He’s not scared of anything, In fact, he’s an adrenaline junky, a risk taker, and he does not fear these dreadful moments. That gives me peace. He makes me brave. My son, Jude Rowan, is my hero.
We are hoping to bring awareness to The world about CHD that many babies and adult suffer from. Jude has a page on facebook called “prayers for Jude” and we update that on a regular basis. That had attracted many moms with the same situation as us and we were able to reach out to them.
We are strong advocates for this and hoping that one day we can find a cure to Heart disease. Until then, we bring awareness via social media and different resources that we have. We pray for families that are effected by this disease and we cry with them and laugh with them and simply relate with them.
It is and has become our life calling and our mission.
-Jude’s mom, Laura Perde