Oliver Engelking Oliver's TARP journey

First post: Aug 21, 2017 Latest post: Sep 26, 2017
Hello everyone, I am Sam, Oliver's mom. In December 2016 Oliver's dad, Bryan, and I found out we were pregnant. We were elated, especially after experiencing two early miscarriages in the few months prior. We excitedly told everyone, including my son, Hunter. He was insanely excited to be a big brother. We went on to find out we were having a boy and we were all so thrilled! Unfortunately at that time we were also informed there was possibly something wrong with our sweet baby. We transferred our care to Mayo Clinic and quickly realized there was way more to Oliver's story than we ever could have imagined. We quickly had testing done and the results showed no meaning behind the anomalies that were found on ultrasound. These anomalies included club feet, a heart condition, an extra vein from his brain to his heart, small size, possible hand defects and cysts on his brain. We were stumped. I then was informed of a hereditary chromosomal syndrome I may have and we immediately tested Oliver for it. It came back positive a few weeks later. TARP syndrome. TARP stands for talipes equinovarus(club feet), atrial septal defect(a hole in upper chambers of the heart), robin sequence(small lower jaw and retracted tongue) and persistent left superior vena cava(extra vein from brain to heart). This syndrome is said to be "incompatible with life", meaning our son had a slight chance of survival if he even made it to birth. The doctors were hopeful with us but informed us that according to science, Oliver had less than a 10% chance of survival. We remained optimistic but were completely terrified. I was then deemed high risk and saw a doctor once or twice a week for pretty much the rest of my pregnancy. We went in at 37 weeks gestation for a scheduled induction. My body and Oliver were not ready for birth and it ended in an emergency csection after his heart rate dipped below 40 bpm. It was an intense experience but Oliver was born breathing! He was intubated to be safe but had an apgar score of 8. We were all amazed! The doctors brought him in for Bryan and I to see for a few moments before he was taken a few blocks away to the Nicu. We followed him the next day and finished our hospital stay a couple floors above so we could be close by. We are extremely blessed to have the chance to stay at The Ronald McDonald house while Oliver gets stronger in the NICU. He is passing everyone's expectations and his doctors can't even begin to explain why he is doing so well. Our baby is meant to be here for some reason that we will all just have to wait to see. Oliver is our miracle and we are so happy you all are joining us on this journey. I'll update at least weekly so check back soon for more! ❤️

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