Friday, May 18, 2012

The Unexpected Call...


Around twenty weeks into the pregnancy I had my next ultrasound.  Seth and I were extremely excited to see our baby and discover if we were having a baby girl or boy.  Just as it was with Reyna it was a thrill to see our baby moving around and looking healthy.  We learned we were having a boy and were excited Reyna would have a little brother.  We loved seeing his tiny hands and feet.  It was such a joy watching him move around and hearing his strong heartbeat.  Not a word was said during our sonogram to indicate that something may be wrong and we left filled with happy anticipation for our little boy.
A couple of days later we got that unexpected call and it was heart wrenching.  I received a call that our baby likely had a cleft lip and possibly palate.  Although this was overwhelming in itself, I took a deep breath and thought how we could get through this and do whatever was needed for our little guy.  However, when the doctor continued on with explanations that the cleft made it more likely that our baby could have an associated syndrome or other birth defects it became increasingly more difficult to hold it together.  She explained that we should see a genetic counselor and a perinatologist. 
After getting off the phone I did fall apart as I explained the news to Seth.  He stayed pretty strong, but I could see worry on his face which is rare.  Gradually it sunk in and we were able to think more clearly.  We then focused with determination to educate ourselves and do all we could to help our baby have the best care and life possible.  We found several great websites such as cleftline.org.  Several sites were reassuring while others increased my concern exponentially.  However, in the end, for me at least, these sites helped me relieve some of the anxiety as they allowed me to feel I was doing something by learning all I could. 
A few days later we had our appointments.  We first saw the genetic counselor.  She made a genetic histogram of our family which showed no indication of a genetic link to cleft lip and palate.  She then shared the frightening and ridiculously wide statistics that with a bilateral cleft our baby could have anywhere from a 15-60% chance of having associated syndromes, depending on the study.  She shared testing options but we declined as we did not want to put our baby at risk for further problems and risk losing him.  We had already made the decision we would continue the pregnancy no matter the outcome.
We then had the 3D ultrasound which clearly showed a bilateral cleft lip.  In the sonogram his cleft was so severe it looked almost beak like.  When we asked about this they told us it wouldn’t really look that way.  When Logan was born it looked exactly like that, but I still instantly fell in love with him and found him beautiful.  I know to others his features were alarming but truly I did not see him this way.  I can understand why they did not think it would look as it did in the sonogram as Logan’s cleft ended up being quite atypical.

Logan's First 3D Sonogram
The sonogram also showed that there was very likely a cleft palate.  However, as they closely inspected and measured the rest of his body all looked well.  This was very reassuring.  After the sonogram we met with the genetic counselor again and she shared that although there are not specific statistics, the likelihood that Logan had other issues was greatly diminished by the number of typical features viewed.  This gave us increased hope that all would be well once we had his lip and palate repaired.  

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