A couple of months ago we were very surprised to find ourselves pregnant with our 4th child. It seemed we were so busy with 3 that we had little time to make a 4th! I wanted another baby. From the moments after I had Violet I told my husband that I did not feel done. This surprise pregnancy felt so right.
I couldn’t wait to tell my friends and family and you, my lovely readers, our big news. I was planning on a big reveal Tuesday, after our 11 week Nuchal Translucency ultrasound and screening. I was literally bursting with excitement to tell the kids. After 2 painful miscarriages, I just had to get through that test.
Usually I am terrified for ultrasounds. I have had some hard and strange things happen in my pregnancies. Violet never moved. Ultrasounds were petrifying as we worried what could be wrong with her. Finally she was born, without any of the problems doctors warned us about. It is strange because on Tuesday, while I woke up nervous, I was happy when I got to Maternal and Fetal Medicine for my test. I go to the high risk doctors for ultrasounds because my first was born with a VSD and had tiny holes in her heart.
As soon as I laid on the table and the wand touched my belly, I breathed a huge sigh of relief. Not only could I see the heartbeat, but as the tech zoomed in my precious baby was kicking its legs and my baby waved. Violet never moved that much my entire pregnancy. I was elated. It was short lived.
The tech could not get a good view of the baby from the front to get all of her measurements. She was able to get the nuchal translucency measurement. It measures the space in the tissue at the back of a fetus’ neck and is used to assess potential risk of downs syndrome, chromosomal disorders and congenital heart disease. We get the test due to Sophia’s heart. They like the reading to be around 2.5 mm but my baby’s was 6.5 mm and the tech said she had some concerns and would be back with the doctor. She just kept saying she could not get a good look. I was terrified. I was wondering when we could get more testing and how we would raise a special needs baby. I had no idea the problem was much bigger than that.
When the doctor came in and looked he agreed that the baby’s head and upper torso were completely blocked by what he called a structure. It was so quiet in there and it took so long I was making inappropriate jokes because it turns out that is how I deal with extreme stress. He took a long time looking and then asked if he could do a vaginal ultrasound for better results. When he looked again this doctor, who has seen so much, looked perplexed and then a bit shocked. He left the room for a moment to consult with another doctor and then came back in with the news.
My precious baby with a healthy beating heart and wild kicking limbs had a tumor known as a Teratoma coming out of its tiny mouth. It is called an Epignathus. The doctor spelled it for me. This Teratoma was larger than the baby’s head, and expected to continue to grow. The prognosis for the baby is awful. Google it if you dare. It is really scary and awful and extremely rare. The chances of its heart supporting this mass through a pregnancy are slim and the number of babies who have survived this condition can be counted on less than 1 hand. The risk to the mother is also high, as this mass grows inside and causes numerous problems. These Teratomas grow up into the brain, through the airways, over the face…..
11 weeks is the earliest they have ever seen one. I was advised to end the pregnancy and offered counseling. I saw the horrible tumor. It was huge. While I will need counseling, I did not need it to make my decision. I looked up at the screen and my beautiful baby and saw an angel. My heart was broken. I wanted to ask if I could watch the baby move around for awhile, but I thought that might be a bad idea. I suppose I wanted to wave goodbye.
Here’s the thing. I never thought I would make this decision. I never thought I would be presented with such an awful diagnosis. I called multiple times to ask if they were sure of what they saw. I asked about my options for continuing the pregnancy. I asked it all and they said this baby was not going to survive. I know they were right, but I will still grieve this day and this decision for the rest of my life. I am thankful that these doctors called me every single day from Tuesday until this morning when I went to the hospital. I could not be more thankful that they understood this decision was a terrible one for me and my family.
I am home and I am physically okay. Now I will start the process of moving forward emotionally.
I have spent the day in my bed, thinking about our precious baby and beginning to say goodbye. When babies are born in Jewish families (my husband is Jewish) they are given Hebrew names. We did not know if this child was a boy or a girl, but I will say goodbye to this baby and name this tiny angel
While we never got to see our angel’s precious face, this baby is beautiful. While our baby was not healthy enough to join us in our home, our angel can now be free and be strong. I chose these names for this baby and for my family and for me, a mother in grief. I will love my family even as I miss this beautiful child and I will be strong for my family and for myself.
I write this as I sit in bed, alone with my thoughts and need to release these words. I am groggy and have not the energy to edit or sugar coat or even spell check. This is my broken heart, preparing to say goodbye.
I want to thank everyone for your support and so much cyber love. It means more than you know to have people thinking and praying for me and my family. I know that so many women have gone through the D&C procedure or miscarriage or the loss of any child any way. My heart today breaks for you too. Our angels are dancing together.