Elias viegtes Rezabala was born June 22nd 2019 at 36weeks only few hours After being born at north York general Hospital they notice a rare function on his heart which he was admitted right away into the NICU room. A Cardiologist was called right away to figure out his issues and they diagnose him with a condition called TAPVD (Total anomalous pulmonary venous drainage)
is a rare form of congenital heart disease where all four pulmonary veins drain to the systemic venous circulation. A term infant was found to have low oxygen saturations on the neonatal only 1 of 100 children are born with Every year.
TAPVD is a condition in which all four of the pulmonary veins are abnormally connected to the right atrium instead of the left atrium. This allows blood high in oxygen to enter the right side of the heart. Blood high in oxygen flows across an ASD, to the left ventricle, allowing some blood with oxygen to reach the body. Without the ASD, blood high in oxygen would not be able to reach the body.
He's was right rush to sick kids hospital and was monitor with in 3 weeks of being born he's had his first Open heart surgery to attempt to correct his pulmonary veins. He's was seen by cardiologist on a weekly basis but things weren't exactly as planned as his pulmonary veins keeps on narrowing, meaning once they close he loses oxygen and he can die instantly. At 6 months old he already had gone through 5 open heart surgeries and was told there wasn't much left to do for him and didn't know how much longer he had left of life, he was in the CCU for 2 months with support of oxygen to keep him stable but they didn't give us much hope. They present us with the only hope of a double lung transplant which can save his life but didn't guarantee us anything we would be going through one situation to another and was also told that maybe he wouldn't survive the surgery. Thankfully they attempted to go through a procedure which is a small surgery to blow up his pulmonary veins with a balloon dilation to keep him stable and go on from there and our little warrior MADE IT💙🙏 He made to his 1st birthday which we were also told he wouldn't make it that long.
He was already listed for the double lung transplant and was 2nd on the list to receive if we got a donor. In October 2020 he again went through another open heart surgery #6 to again try to correct the veins but no success. Throughout his all his been back and forth for surgeries, procedures and emergencies as he's a high risk children where anything can happen at anytime. We had 2 calls from lungs transplant that we had a donor but the surgeon shut it down cause he didn't feel safe to do his surgery. In December 22 2020 we had a schedule appointments inside hospital for an MRI. Cardiologist had a scheduled planned to again try to do another open heart surgery to correct his veins in January 2021.
While waiting in the waiting room for him i get a phone call that we have match donor for a double lung transplant and right away he was admitted to prepare him for this lung transplant
not knowing the nightmare that was going to happen. I questioned the doctors regarding the plan cardiologist had for the open heart surgery, they had a meeting and cardiologist said no to transplant while being admitted they notice a flutted on Elias heart rate and they keeped him to monitor him on December 23rd they gave him a medication to slower his heart rate after giving that medicine i left my son sleeping while i get myself some food hours after I get a phone call that i needed to come back i rushed upstairs and outside his door i see 20 doctors not knowing what's going on and they tell me they don't know what happened Elias had a code blue he stopped breathing and are doing the best to get him back. My heart dropped!!! Right away they did everything to bring him back he was rushed to ICU to work on him and he came back to us 🙏
Right away they took him for an emergency open heart surgery #7 on December 24th thing weren't looking good so again he has to go for another emergency operation #8 after surgery we had a meeting with all the team and they told us he needed to go back to surgery to place a pacemaker to him because of the flutters he was having in his heart.
After surgery they keeped him in sedated in a comma because his small little body has gone through so much and he couldn't wake up and he was also on a very high dose of morphine and oxygen. He spend almost 3 months in ICU and he survived. he's been weekly checked by cardiology and has had monthly procedure for balloon dilation to blow up his pulmonary veins and keep him stable. He's has gone through #9 Open heart surgeries and 20 Cath procedure's and monitored by pacemaker for his heart flutters. We been back and forth to hospital on a monthly bases Elias is only 2 & half years old and continues to fight for his life. He keeps showing us what a strong warrior is he and no matter what doctors have told us he fight through all the odds along his way and the unknown.
Elias story has brought a community together to his awareness. He has shown us to believe in the power of prayers. He is also part of sick kids campaign and sick kids foundation to donate for the new sick kids hospital that is being built. We have donated Elias bravery beads which his story of everything he's has gone through just Like many warriors who fights through the dark clouds of childhood illness
I deeply will like you thank you all for all the support and generosity we have received through the year.
We are truly and forever grateful