Nick and I thought this would be a good time to start a new blog to act as a journal through the events leading up to and following birth of our daughter, Emma. Yes, that’s her name! 🙂 We will still keep her middle name a secret, just to keep everyone guessing.
It has been a full week today since we were told of our daughter’s heterotaxy syndrome. On October 28th, Nick and I went to the doctor for a routine ultrasound to make sure our baby was growing the way she had been. With our son, Noah, I never had an ultrasound longer than 20 minutes, but this time it was different. Everything was going smoothly and it seemed like it was flying by so fast. I always loved seeing our baby and wanted to just stay there all day watching her move around. Towards the end, the sonogram tech said that baby was in a strange position but that she thought she was able to see everything that was on her checklist. When the doctor came in, he was somewhat serious. When the doctor isn’t smiling, you know something has to be wrong. He said that during the sonogram they were unable to see all four chambers of her heart. He said that we shouldn’t be too concerned (yeah right) at this point, but that he wanted to refer us to a level two sono at a maternal and fetal clinic in Wichita. I could feel my heart racing and my stomach hit the floor. They set up the appointment and sent us home.
Later that afternoon, I had the appointment set up and had an entire week to wait for the next appointment, wondering if there was something serious wrong…Â
Thursday, Nov. 7th arrived and surprisingly enough, I was calm and not too terribly nervous. I told myself there was no reason to worry and that if or when there was anything wrong, we’d deal with it. And just like the other sonogram, it went smooth until the very end. Of course the sonogram techs make no facial expressions so it makes it impossible to know if something’s wrong…but we knew.
We were seated in a room where we waited for over 40 minutes to see the doctor.Â
this is what we were told:
Our baby has what is called Heterotaxy Syndrome with right isomerism. Her stomach is on her right side when it should be on the left and the right side of her heart is larger than the left which is called Complete Unbalanced AV Canal Defect. She also has a septal defect (holes) where the walls dividing the four chambers didn’t form. Baby also has a 50% chance of having Down’s Syndrome. Emma will need immediate open heart surgery after she’s born to repair these defects.
After we were told all of this, were then asked if we wanted to have an abortion. I never thought I would be asked that, especially at almost 26 weeks pregnant. Of course we declined.Â
I don’t even know what was going through my mind as she was telling us this. Nick and I hardly said a word on our way out and I was wishing I would have paid closer attention in anatomy about the heart.
So it’s been a week since our world was turned upside down. No one wants to hear of their child having a serious heart defect.Â
We know God has a plan for our little Emma and we are trusting Him that she will continue to grown and that they will find no other defects. In the next few months, we will be meeting with several doctors as we make plans for the birth of our sweet girl.
Thank you all so much for your prayers and encouraging words. We have a long journey ahead of us.
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Nick and KatelynÂ
Emma's Journey 