Video Q&A about Fetal Surgery and Congenital Diaphragmatic Hernia

@fiona170 @oevuh @cdhmomma2016 @bkoj @rwc2 @baileyb @jdejonge @informed @chiggs15 @shancl: thank you for your great questions during yesterday's Video Q&A with Drs Mattke and Ruano. Many of your questions were answered during the broadcast. You can see the full broadcast here: https://connect.mayoclinic.org/webinar/video-qa-about-fetal-surgery-and-congenital-diaphragmatic-hernia or by clicking VIEW & REPLY in the email notification. I will post Dr. Ruano's answers to the questions we didn't get to during the live broadcast.

I'd also like to invite you to take advantage of "meeting" here on Connect to get to know one another. Why don't you start by introducing yourselves? What treatment and support did you get or not get when your child was diagnosed with congenital diaphragmatic hernia?

Dr. Ruano writes: "The statistics for babies that had FETO vs those who did not undergo FETO are based on some studies from Europe, South America and now some data from United States. My experience considering the use of ECMO or not, is that our results have demonstrated that FETO improves the survival rate for babies with severe CDH from 10% without FETO to 50-60% after FETO in a population that we did not use ECMO. Here in the United States, we are investigating that still; however, our initial results demonstrated that the survival rate was 80% after FETO versus 20% without FETO. In addition, our initial study in the USA showed that the need for ECMO was 70% without FETO versus 30% after FETO."

Dr. Ruano responds: "Excellent question. Usually ECMO is performed if the baby is born at >=32 weeks and has >=2.0 Kg. So, the answer is Yes, if the baby is born after 32 weeks, but maybe not if the baby is born before 32 weeks. We need to discuss case by case."

Dr. Ruano writes: "The parameters to qualify for FETO are: (1) isolated CDH (no other structural or chromosomal abnormalities) and severe CDH (measured by the lung area-to-head circumference ratio, if it is less than 30% of expected for the gestational age)."

Dr. Ruano writes: "I have done 83 FETO procedures. I published my previous experience. In my experience, FETO performed at 26-30 weeks improves one category of severity.
I classify CDH in 4 categories: extremely severe (extremely rare and almost lethal), severe, moderate and mild. The mild forms have an extremely benign course and don’t need FETO. The extremely severe CDH is almost lethal without FETO, and will become severe forms after FETO at 26-30 weeks with still 50% survival rate after FETO. The severe forms will become moderate CDH after FETO and will have a survival rate of 80%. We are investigating if FETO can reduce the morbidity in moderate cases."

"Once the baby survives without the need for oxygen therapy, the long term survival is good."

Question: If a parent had the choice of doing a FETO surgery or delivering at an institution that will perform the CDH repair surgery within hours of birth (if needed), which would you recommend - based off the added risks that performing such a surgery in utero can cause preterm labor and put baby in danger or being to small for ECMO.

Dr Ruano writes: "I would recommend choosing a place with experience in fetal tracheal occlusion and postnatal management.
I dedicated my life to fight for those babies."

Dr. Ruano writes: "Excellent question. The reason is that we need to balance the risks and benefits of fetal intervention. And also we need to consider the natural history of the disease.
I classify CDH in 4 categories: extremely severe (extremely rare and almost lethal), severe, moderate and mild.
The mild forms have an extremely benign course (survival rate of more than 90%) and don’t need FETO.
The extremely severe CDH is almost lethal without FETO, and will become severe forms after FETO at 26-30 weeks with still 50% survival rate after FETO.
The severe forms will become moderate CDH after FETO and will have a survival rate of 80%.
We are investigating if babies with moderate CDH will benefit from FETO by reducing the morbidity."