Tyler has a CHD - Congenital Heart Defect.
He was born with (partially obstructed) infra-diaphragmatic TAPVR.
I've said this acronym more times than I can count.
I've said "Congenital Heart Defect" over and over in my head too many times.
Total anomalous pulmonary venous return (TAPVR) is a rare congenital heart malformation in which all four pulmonary veins do not connect normally to the left atrium. Instead all four pulmonary veins drain abnormally to the right atrium by way of an abnormal (anomalous) connection. The pulmonary veins are the four blood vessels (two on each side) that return oxygen-rich blood from the lungs to the left atrium of the heart. TAPVR accounts for approximately 1.5% of all cardiovascular anomalies and has an incidence of 1/15,000 live births.
In plain terms, his veins were not connected where they should have been and he was not getting oxygenated blood from his lungs to his heart. His lungs were full of fluid at the time we brought him to the ER and his Pulse Ox level was about 80% (Should be 99-100%). His little heart needed to be fixed immediately.
Tyler was born in May of 2013 ... weighing 6 lbs 15 oz and he was 19.5 inches long.
He was discharged to go home like any normal baby would be. Some CHDs are not caught in utero or after birth even.
4 days later, we brought him to the emergency room for rapid breathing.
From that moment on, our lives would never be the same again & changed forever.
In the 24 hours following Tyler's ER visit, he was admitted to the Morristown NICU, transported to New York Presbyterian Children's hospital, and had emergency open heart surgery to fix his heart defect. During that time, we got a crash course in pediatric cardiology and congenital heart defects. No matter what you think you know as a parent, it can never prepare you for something like this.
HERE IS MY POST ABOUT TYLER'S HEART DEFECT and his emergency open heart surgery. It's a good starting point if you're not familiar with Tyler's story.
The CHD Facts:
- 1 in 110 babies are born with a heart defect making it the number #1 birth defect.
- CHDs are the #1 cause of death of children under the age of 2.
- There are more than 35 types of CHDs.
- CHDs are problems with the heart’s structure that are present at birth.
- The complexity of some of these heart defects can require long hospital stays and multiple surgeries.
You can also click HERE for more information about Congenital Heart Defects.
Tyler in 2013
Tyler in 2015
I have to say this is amazing and very unreal at the same time. My wife and I had our 2nd son this May, the 23rd to be exact. His name is tyler and he was born with TAPVR, he has undergone repair and is now having some complications. We are waiting to see if another surgery is required. What is the chance that both of us had the same CHD and both kids are named Tyler born in May. Crazy. I hope your Tyler is doing well. We are praying for ours.ReplyDelete
Wow. That is so crazy - Our daughter (she is 3) was born on May 23rd! Tyler was the 16th of May. Do you have a personal webpage or facebook page that I could follow to see how your son is doing? I like to try and support as many families as I can to let them know they are not alone. What was the TAPVR defect specifically? Did your Tyler have all the plumbing and they just had to move everything and re-attach everything like our Tyler? God Bless.Delete