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Survivor Stories
 
A Chat With CDH Mom Lindsay 

 

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

It was my routine 34 week ultrasound when my doctor noticed that something was wrong. Within two days I was at SSM St. Mary’s Health Center seeing Dr. Erol Amon, who confirmed the Congenital Diaghragmatic Hernia diagnosis.

2.  What was your first reaction when you found out?

Our first reaction was that we were scared we were going to lose another child.  We lost our first daughter nearly five years ago. We were hopeless and devastated.

3.    How did you end up at the St. Louis Fetal Care Institute?

Dr. Amon set up an appointment for us to meet the with Dr. Yang, Dr. Vlastos and the FCI team to discuss what was happening and to have further tests done.

4.    What was your course of treatment?

Since my pregnancy was so far along, our course of treatment was to have routine ultrasound and other tests.  Otherwise there was not anything else to do until after our daughter was born.

5.    What did you find most helpful through your journey?

What we found most helpful through our journey was to have all the information we could.  We also found having hope and praying helped us.  We have a great support system through our family and friends.  It also helped the staff of the St. Louis Fetal Care Institute was always available if we had any questions or needed anything.

6.    Tell us about the birth of the baby?

At 39.5 weeks pregnant we went into St. Mary’s to be induced.  We expected the induction would not take long since it didn’t with my other two inductions.  I wasn’t progressing very well so it took longer.  Finally, on Thursday morning, May 13, 2010 after starting the induction on the evening of May 10, it was time for Karlie to come into the world.  I was taken into the operating room to deliver since that room was large enough to handle the team of doctors from St. Mary’s and SSM Cardinal Glennon Children’s Medical Center.

I pushed for 30 to 40 minutes and then Karlie was finally here.  It was very scary because at that moment we were not sure if our daughter would survive.  The team that worked on her did an awesome job to get Karlie stable enough to be transferred to Cardinal Glennon. 

7.    Tell us about baby Karlie’s journey after she was born?

Karlie weighed 8 lbs. 14 oz. and was 21 1/4 in. long at birth.  Within five hours of her birth she was in surgery, being placed on Extracorporeal Membrane Oxygenation (ECMO), repairing the hernia and getting a feeding tube placed.  She did very well in surgery and everyone continued to be impressed how she improved throughout the days.

She was only on ECMO for eight days, and the ventilator for 15 days.  She spent seven weeks in the neonatal intensive care unit ( NICU) and was able to come home free of any monitors or oxygen on June 21, 2010.

8.    How is Karlie doing now?

Karlie weight 21 lbs. 4 oz. and she is a very calm, relaxed little girl.  She is a happy baby and doing good.  Even though she is having difficulties eating by mouth, we are truly blessed that this is the only real problem she is having.

9.    What did you learn from this experience?

We learned that anything is possible.  Being through a loss previously of our first daughter, we knew of the bad that could happen. We are truly blessed to have our daughter Karlie here with us.  We thank everyone that cared for Karlie from the bottom of our hearts.  Everyone at FCI is the greatest!


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