OUR EA/TEF STORY

Castalia, our first child, was due on May 19th 2009. On March 13th, my water broke while my husband was out of town in a city I had just moved to and was alone. Needless to say I was terrified, I had never known anyone with a child born at 30 weeks.

After  a night of monitoring, she was in fetal distress and was delivered on March 14th 2009 via C-section. As she entered the world, the room fell silent, no crying. I asked where my baby was, no one answered me. I remember being stitched up, all alone staring at dead space. I felt empty and numb, expecting for someone to come and tell me she was dead. Instead, they brought the tiniest human being I had every seen, handed her head to me for a two second peck and off to the recovery room I went.


I was still drowsy when they asked me to sign papers as Castalia needed to be seen at the Children’s Hospital for a suspected EA/TEF repair. I had to ask the doctor to explain this to me in terms I could understand.

And so started the roller coaster ride that the NICU is, two months of watching for every oz gained,  weighing every diaper (doesn’t every parent do that?), asking for permission to hold your own child, adding and reading up about a collection of strange sounding labels that would make up nearly the whole alphabet, labels like EA/TEF Type C, IVH, ROP,VUR, GERD, PDA, Tracheomalacia, Dysphagia, aspiration.

The next two and a half years were very rough, while she got off her NG tube around her due date, she was very small, would eat very little and lots of coughing and tears (mainly mine) at every meal. We also had a few hospital stays due to respiratory distress but we managed. At around two and a half, something happened, her swallowing system matured and Castalia learned to clear her throat and cough a lot less. It was life changing. At four, we discovered she had a Laryngeal Cleft which explains a lot of the issues she had while eating and how her body learned to assimilate. We went to Boston to have it repaired last summer, she still is aspirating but it is much better. 

She just turned six and is doing very well overall. She gets sick a lot but has not been hospitalized for over a year. Her tracheomalacia is still fairly audible, she is not very physical and gets winded easily but she just loves life and takes joy in the smallest things. She is one of the kindest, sweetest, smart child I have ever met.

 I feel like deep inside her, something senses that she wasn’t mean to live this life. It was given a second chance and she just wasn’t meant to see these things had she been born some time ago.

At first, I used to wish this condition away but today I can honestly thing that I embrace it as it has made us better parents and made her an exceptional person. You can't have a rainbow without the rain and this rainbow of mine is worth every drop.

EA/TEF is just part of our journey as a family and as individual, that is what EA/TEF means to me.

Vanessa Munsch