The Diagnosis

by Kayla Schacht

The emotions a positive pregnancy test can bring a couple can vary from extreme happiness to complete fear. When we got our positive test, it was somewhere in the middle, a mixture of shock and joy. We had suffered an early miscarriage at 6 weeks the month before and, even though we were trying for a baby, we didn't expect it to happen so soon. We were so nervous to tell anyone due to our previous loss but couldn't contain our joy to share the news of our newest Bean that we announced our pregnancy on Christmas. Even though we were only a few days passed the six week mark we felt "safe."

Everything was going amazing and I was enjoying all the small things pregnancy can bring, even the morning sickness because it meant our Bean was still with us. My midwife asked that we come in for an anatomy scan around 12 weeks to just to "check things out" and since I have preterm labor issues to make sure my cervix was handling it all ok.

On February 4th, 2014 we scheduled our scan and we were so excited to see our baby. We went in full of excitement! We brought our two youngest girls with us, ages one and two, and even though they really didn't understand, we were so excited to share that with them. Having 4 girls before our newest bundle we were pretty used to how ultrasounds went and were sitting there joking about if our baby was a boy or girl -- with me not being far enough along we knew we wouldn't know yet but it was fun to imagine -- and just sitting in awe of our Bean. We thought everything was fine until the ultrasound tech stopped and started really looking at our Bean and said that she would like to call my midwife in to have her look at something, if we didn't mind waiting. As a "veteran" mommy I knew this wasn't right, the ultrasound was not going the way I knew it should, and I started to panic. I looked at my husband for reassurance that it was nothing and that they were mistaken and he kept telling me he was sure it was fine and that he loved me.

It seemed like days for my midwife to finally come into my room and examine our Bean for herself. When she finished, she sat down with us to say she was concerned with the amount of fluid on the back of the baby's neck and that it was thicker then normal. She couldn't tell us anything more since she wasn't trained in diagnosing and told us we needed to see a specialist. She did explain to us that the fluid could be a sign of nothing or could be a sign of some chromosome abnormality. I remember sitting in the office feeling my head spin and the feeling of complete helplessness fill my body. There was no way this was happening to MY baby. I did everything right. I quit smoking, ate healthy, took my vitamins and even took all the meds the doctors had prescribed to help my cervix strengthen. They sent us home with nothing but our ultrasound pictures and Google. My husband instantly started searching the internet for anything about our Bean's issue. He read article after article and found stuff from it being an extreme thing to it being nothing. We were waiting on my midwife to call back to let us know when they could get me into the specialist to get more of an idea of what was wrong.

We finally got the call and they told us they were a month out, but my husband knowing me like he does knew there was no way I could emotionally handle waiting that long so he called every doctor in our state begging them to fit me in sooner. Well his persistency paid off and we were scheduled for a week later. That week was the longest week of my life. Wanting answers so badly but also dreading knowing. At the time my husband was working nights and so I had so much time to myself to think about all the options and what we would have to overcome as a couple and family. I shed many tears through this week. I couldn't sleep. Eating was a huge chore because I was always nauseous due to stress. The night before our appointment we sat in bed and thought of what was to come. We decided then no matter what our Beans diagnosis was, we would give our child life.

The next morning I couldn't even see straight. I got my two older girls up and ready for school while trying not to break down completely as we did not want them to know something might be wrong. We got them off to school and started the 20 minute drive to the office I will now hate more then anywhere on this earth. I wanted to scream at my husband to drive slower, to turn around and take me home. But I sat quietly in the passenger seat staring straight ahead begging God to spare me the heartache I knew in my heart was in my near future. We got back into the room they were going do the ultrasound in and I remember everything so vividly; the smell of the wipes they used to sterilize everything with, how cold the room was, the sound of my two younger playing so quietly, the feeling of my husbands strong hand holding mine and the sound of the door opening as the lady who was going do the test came in. We sat there trying to enjoy our ultrasound of our Bean and asked the ultrasound lady if she could tell us what we were having. We knew something was wrong when she told us she couldn't because the baby's organs were on the outside of our child's body. I started shaking not knowing if this was something they could fix or why this happened. She did a few more scans at different angels and then told us the doctor would be in to talk to us. My husband sat and held me as I finally completely broke down knowing my life would never be the same, that I was forever changed. The doctor came in and sat down and put more jelly on my stomach and started to do the scan again and pointed out what was going on with our baby. We saw that the baby's organs were exposed, there was something wrong with the baby's legs and one wasn't developing at the same pace as the other and looked clubbed, the spine was incredibly crooked and from what the doctor could see the umbilical cord was extremely small. I started begging for him to check to see what the sex of this little baby was, he looked and we were having another girl!

My precious little girl.

The doctor then gave us the grim diagnosis of Limb Body Wall Complex. This was such a foreign thing to us and we had no idea what this even was, the doctor explained due to organs being exposed in such a major way there was nothing we could do for our princess. We asked a few more questions about what was to come and then the options for our angel’s future and it was then I knew I would never bring home this little baby who I hardly know, who I hadn't even felt move yet home. I suddenly felt so protective of my child as termination came up and refused and snapped at the doctor and told him I would never murder my child. He looked at my sympathetically and apologized. The next 20 minutes while my husband kept asking questions and figured out our next steps were I went into complete shock and everything was blurry. I started whipping off the jelly stuff off my belly and sat up and kept going over the words the doctor had stated "incompatible with life". How could my princess not be compatible? I loved her so much and I was questioning God's love for me and my child. The doctor left and I got off the table and started walking out, leaving my husband to get the kids and follow me out to the car.

Stepping out into the sun I knew at that moment I was going to start the hardest journey of my life: our journey of carrying to term with a fatal diagnosis.

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Kayla Schacht is a writer from Utah. She is married to her knight in shinning armor, Bryce, and they have 5 beautiful girls. Her youngest princess lives in the clouds after living for 48 minutes after birth, all which were in her daddy's arms. Elly Jae was diagnosed with a fatal birth defect at 13 weeks gestation. She spent 31 weeks and 5 days safely in her Mommy's womb where she was cherished every second. Elly Jae has changed not only her parents and sisters lives but lives of complete strangers. Find her on Facebook, at Prayers for Little Elly Jae.