Kayla's Story

Tears.Instant tears.  My doctor just told me that my unborn child had this defect.  A defect I have never heard of before.  Yet, tears streamed down my cheeks.  Congenital Diaphragmatic Hernia. Congenital (born with) Diaphragmatic (diaphragm) Hernia (hole).  There is a hole in my daughter’s diaphragm? 

Research.  Research was not a good idea.  My husband and I didn’t find too much on Congenital Diaphragmatic Hernia (CDH).  And what we did find broke our hearts.   We found out that this birth defect affects approximately 1 in 2,500 babies, 1,600 a year and half of them do not survive.  This defect is very rare!  The hole in the diaphragm creates a major problem.  This hole allows for abdominal organs, such as the stomach, spleen, intestines and liver, to migrate up into the chest cavity, pushing the heart over and taking up all the space allotted for the lungs. 

My hope is to spread awareness of this defect as most parents who find out that their babies have CDH do not even know what it is.  My husband and I were devastated when we learned of all the issues CDH brought to our unborn child.  We want to spread awareness to acknowledge that this birth defect still needs more education and more research to improve the survival rates and to lessen the residuals survivors and their families endure.  My hope is that after reading this email, you’ll know what CDH is and go out and tell someone about it.  Just one person makes a whole lot of difference. 

When my daughter, Kayla, was born, she let out the tiniest whimper, which was huge for a baby that hasn’t developed much lung capacity.  She was instantly intubated, sedated and paralyzed.  My doctor, bless her heart, let me hold my new born daughter just long enough to get a picture with her.  Then she whisked her away to the Neonatal Intensive Care Unit (NICU).  Six hours later, we were allowed to go up and see her.  We weren’t allowed to touch her.  We weren’t allowed to pick her up. We could only talk to her.  Sit next to her.  Not help her.  Tubes going everywhere, in and out.  Monitors all around, beeping.

13 days go by.  13 whole days of just sitting next to her, praying she would become healthy enough for her surgery. On that 13^th day, Kayla was stable enough for this major surgery.  Kayla’s stomach, spleen, intestines and a portion of her liver had all migrated into her chest cavity.  A Gor-Tex patch (the same material that makes your boots waterproof) was used to act as the missing portion of her diaphragm.  She remained intubated, sedated and paralyzed for the next 10 days.  On her 23^rd day, she underwent another surgery.  Finally, on her 25^th day, my husband, her father, was able to hold her for the first time.  Day 29, she was extubated. 

Now we fight to feed her.  A baby without milk for almost an entire month was not very skilled at eating, or holding it down once she got the hang of it.  As we fight to feed her, we also fight the pain medications.  We try to reduce the pain medications, and that creates a drug withdrawl.  She was miserable.  I remember holding her so tight I thought I’d hurt her just to help her not shake.    Slowly, she beat everything CDH put up against her.  After 55 days of living at Crouse Hospital, she was healthy enough to go home. 

Shortly after her 2^nd birthday, at a routine x-ray appointment, we learned that she had reherniated, meaning her patch was no longer stitched all the way around.   This meant another major surgery.  This time, only her intestines had migrated into her chest cavity, but her spleen was stuck to her patch and when they moved that, it caused a little bleeding but thankfully was quickly fixed.  Her large intestine needed stitches as it had small abrasions on it and they had to remove her appendix for future safety as it was on the wrong side. 

She is now 3 years old.  She is the strongest person I know!  She loves lollipops, dancing and singing.  She enjoys swimming and playing softball.  She loves to go shopping and out to eat.  You would never know what my little girl has gone through by looking at her.  She talks non-stop, plays hard, and lives well.  She still has some issues, but they are small in comparison to what they could be.  We were lucky.  Our CDH baby survived.  Many don’t. 

She will continue to have x-ray checkups, her next being Apr. 11^th and we are praying for a good report.  She cannot play contact sports and most likely will not be a track star.  She will have to deal with her worried mother her whole life.  Thankfully!

Please help spread awareness for CDH.  I have two blogs, one is personal, all about Kayla and the other is to help other CDH moms and dads, to provide them with information I had learned along the CDH rollercoaster.  Wear turquoise in support of CDH awareness on March 31^st and tell at least one person about Kayla’s story and that will help make a difference.