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Survivor Stories
 
A Q&A With CDH Parents Janna and Paul 

 Janna and Paul are expecting their second child on April 19, 2011. This is the story of their

 Congenital Diaphragmatic Hernia (CDH) pregnancy journey.

 

1.    How did you find out your baby had CDH?

Janna:

We went to our regular 17 ½ week ultrasound on a Monday. I could tell by the way the sonographer was acting that something was wrong, but she couldn’t give us any more information, besides to tell us we would have results in a week.

The next day the phone rang, it was my doctor’s office telling me they needed to see me that day. At the office they told me they saw something called a “gastric bubble.” I immediately went home and got online trying to learn more about was wrong. They scheduled me for a Level II ultrasound that Friday. We knew something serious was wrong, we just didn’t have a definite answer as to what it was.

2.    What were your reactions to the CDH diagnosis?

Janna:
It was nerve wracking knowing something was wrong. We were immediately referred to the St. Louis Fetal Care Institute (FCI) and made an appointment as soon as we could. After talking to Amanda (FCI Fetal Care Coordinator) I felt reassured that someone was going to help me. After our first appointment the FCI team took over the process and helped guide us through the pregnancy.

When we saw Dr. Vlastos at the St. Louis Fetal Care Institute he was marvelous at explaining the situation. It was hard information to hear, and he didn’t sugar coat it, but he explained it so well. As he was telling us the situation the tears just started to roll down my face.


Paul:

As soon as I heard the diagnosis I just wanted to find out more, I wanted to get all of the facts. Once I saw those I was really worried about Janna, I knew we had a lot of tough decisions to make.

At first it was hard for me to talk about. Once I started to share it with others it got easier and easier and the more I shared the easier it was to handle. It is such a roller coaster ride every time I tell the story. People’s first response to the pregnancy is congratulations, and then I’m sorry.

3.    What have you learned through living through this experience?

Paul:
How strong of a person my wife is. I feel like she has handled this better than me. Words of wisdom for other dads: Be as positive as you can. In the end I can’t control this and focusing on the negative just brings us down. I also thank god every day for our extended families, they have been a tremendous source of support.

Janna:
This whole experience has taught me not to think, “Why do bad things happen to good people?” I have not questioned why me. If you question the bad, you have to question the good. I made a choice early on not to question why, I needed to accept what was handed to us. I will learn a much as I can about CDH, deal with it as it comes, look at the situation and our options, and do what we as a family think is best.

UPDATE:

Janna and Paul's son Garrett is now an active toddler, who loves playing with his big brother.

 

 

 

 

 

 

 


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