Mkjhfuiwafna Syndrome

Mewurhewjf Syndrome. That is most certainly what the doctor said, because I had no idea what he was talking about.

I had never heard the word Meckel Gruber in my life before February 3. Now it’s in my every day vocabulary. We went to the doctors appointment trying to be positive. Trying. I was nervous. My husband, army man that he is, seemed fine. Happy in fact to finally know what was happening. He chatted with the nurse who was doing the ultra sound. “Whats that?” he asked, as blue and red colors flashed on the screen. “That is the blood running from the umbilical cord to the heart and throughout the body” she replied.

I saw it. I saw it before he did. I saw it before I knew what is was. There was a huge hole in his skull. A missing piece. It didn’t close the circle. Now, I don’t know much about reading ultra sounds, but, I do know where a skull is supposed to be. At this point I had asked my husband to stop asking questions, and to let the nurse finish her job. She was quiet, and when she left the room after what seemed like a very long scan, I told my husband, “Somethings really wrong.”

Our gender reveal party


Then the doctor came in. He asked me to lay back down and they scanned my abdomen again. With my husband holding my hand he laid it out for us.

“Here,” he moved the arrow over the baby’s stomach area “is where the organs should be. But see this huge black thing. It is one of his kidneys. It’s 20 times the size it should be.” Well it’s not good…but people live with one kidney right?

Then he pointed at the skull. “Also, his skull is not enclosed. The brain is leaking into the amniotic sac. Basically, he is brain-dead. He has no working kidneys and his other organs will start to shut down.” He started to talk about producing urine and ultimately, the baby would not be able to produce urine and that would be what would cause him to, die, in the end, I  guess. I hadn’t stopped listening. Actually I was trying very hard to focus on what he was saying. I just didn’t know where it was leading. But the reality of the situation hit and the tears became to much, and I couldn’t focus on words anymore.

Our son was all but dead.

The doctor was very matter of fact. He gave us all the knowledge of the trifecta that is the diagnoses for Meckel Gruber and told us that in some cases the baby could be carried to term, but would pass shortly after being born. It’s 100% fatal. There are no survivors.  He said our case was severe, and he felt the baby would miscarry within a month to 6 weeks.

So, that was that. February 3, 2017. The date that we found out about Meckel Gruber. The doctor had a nurse/counselor come in with him and when he finished giving us the details of our child, she took over and gave us the details of the next steps to take. The doctor stressed that a medical interruption would be the best thing for us, and wanted us to know that it was NOT in any way an abortion. That it would be safer for me to take this route, because a natural miscarriage during second trimester could be dangerous. (Side note- I will discuss this and my feelings on this in another post, I know people have differences on this matter. I myself was torn. I hope no one is ever in the situation we were put it.)

My husband, the amazing man he is, took over from here. Did we want to wait to miscarriage naturally, or have a medically interrupted procedure? The nurse gave us all the information, but stressed that if we choose medical interruption or termination or whatever you call it something needed to be done soon. We hit 20 weeks the next Sunday, and it had to be done in the state of Ga before 20 weeks or we would have to fly to Denver. So…that’s the decision you’re left with in a case like this. Medically interrupt your pregnancy, or put yourself at risk and miscarriage naturally. No choice is right, no choice is wrong. Other people will tell you what they think you should do with your body, your child, your choice and thats not right. So we had to choose and I hope to never have to go through it again.


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