Featured patient of the week is CDH warrior, Austin Tanner. Austin is currently in the NICU and in the trenches of fighting CDH. His mom, Sarah, had this to share about Austin’s journey to this point:
“After three failed rounds of fertility, I walked into the specialists office on my 31st birthday to say I was giving up and couldn’t handle all the hormones and injections any longer only to find out I was pregnant. At 8 weeks they did an ultrasound and told us the gestational sac was to large, there was a bleed and they couldn’t find a heartbeat. The specialist recommended a D&C, but we asked to wait a week and look again before we had the procedure. We were told it would be a 1 in a 1,000 chance of being a viable pregnancy but a week later there he was, normal sac size, no bleed and a strong heartbeat. He was our little fighter. We didn’t know then just exactly how true that nickname would be. The pregnancy progressed as normal and then at 19 weeks the maternal fetal medicine doctor said they saw something abnormal on his ultrasound so they wanted to send us out for further testing. The following week at 20 weeks after having an ultrasound with a specialist, they walked in, handed me a box of Kleenex and said, “I’m sorry but your son has CDH which is a life threatening condition that most don’t survive from. To make matters worse, it’s on the right side with his liver up and he has no lung on that side. I’ve asked a genetics councilor to come and speak with you on your options.”
Next the generic councilor came in and said we needed to talk about an abortion and starting over. I was in complete shock, felt like an elephant was sitting on my chest and the room was spinning 90 miles an hour. I wanted to scream from the top of my lungs HIS NAME IS AUSTIN stop talking about him like he doesn’t matter!!! My husband and I told her an abortion was never an option for us personally and that we would take 10 minutes with him over nothing if that was all we were given. I cried all the way down the hall, to the car and the whole hour car ride home and then I decided that was enough sulking and it was time to figure this out.
I got on the computer, started looking up CDH on Facebook and the internet to try and get as much information as I could find. There were three different hospitals in the US that kept popping up during my research but Florida seemed to be the one I kept seeing most. I searched Dr. Kay’s on YouTube to watch videos of him speaking, found stories of children who were in his care posted on Facebook and decided that day, the day of the diagnosis that this wasn’t the end. I called Johns Hopkins All Children’s Hospital the following morning and gave all my insurance information and we were accepted within twelve hours. Six weeks later, I was getting on my first ever plane to travel from Michigan to Florida for the consultation. The MRI at 27 weeks showed a small amount of lung on the right side, with an estimate of 45% liver up. We were told he had a 75% chance of needing ECMO at birth but he gave us 90%-95% chance of survival. Those numbers right there meant this is exactly where we were meant to be, no doubt in my mind.
Austin was born June 2nd 2020 at 38 weeks weighing 8lbs 5oz and he was a lot sicker then expected. He had 75% liver up plus intestine with only 7% diaphragm on the right side. He was rushed from the delivery room to the OR to be placed on ECMO within 30 mins of life. His repair surgery took place the following morning and he spent 30 long days on ECMO needing 17 blood transfusions and one complete circuit change.
He’s now been off ECMO and we’re working on lowering the ventilator but he’s doing amazing for being classified as most severe at birth. The nurses have named him their little fire cracker because he’s so feisty and full of life. HE’S HERE, HE’S ALIVE AND HE’S THRIVING after two different times in utero we were told to give up because he wasn’t “viable” or he “wouldn’t survive. The world has big plans for Austin and he’s here to show them just how strong a child with CDH can be.”
