I had always wondered, if, at some point, I would suffer the loss of a miscarriage. For some reason, I had never been concerned about a birth defect. I guess I figured that once I felt a baby kicking and moving around and good heartbeats, everything must be fine. Here is my story of Shalome Renae…
There’s Always Room
“Mama baby!” Timothy said as he patted my tummy. “No, Timmy, there’s no baby in Mama’s tummy.” I was determined that I was not going to get pregnant while we were living in the RV. Here we were with all nine of our children while we worked out the details of building our house. Where could we put a baby? Our youngest was still in our bed with us! Well, as it turns out, I soon found out I was, in fact, pregnant with number ten.
Not My First Rodeo
While I was used to being pregnant, I was not used to our tight quarters and I knew it wasn’t going to be easy. In fact, it was my most challenging pregnancy. Small doorways I could barely fit through, tall mattresses I could barely climb up on, we were already on top of each other and now my balance was thrown off. I like to get an ultrasound right away in the beginning to help determine the gestational age.
Preparing My Heart for a Birth Defect
On top of everything else, November was when “the virus” finally hit the family. We were all so sick for months. I had this little fear sometimes that my illness would affect the baby. Just a one second thought and then I’d brush it away. Several times during my pregnancy, Timothy would burst into tears and say, “baby owie.” It would take me several minutes to calm him down. “Baby is fine, Timmy” I would say and then distract him. [Timothy has Down’s syndrome and has no understanding of what a birth defect is, but I wonder now if he had some sort of understanding]
Finding our Rhythm
Once Spring came, we were feeling so much better and I was really getting in to the groove planning how we would add another little one to the family. I remember shopping for baby clothes and getting them all washed and folded. We don’t usually find out gender, so I have to be ready for both. I can never resist opening that first pack of diapers and seeing how little they are. The kids were all so excited for a new little one to hold and play with.
Planning a Unique Homebirth
I had delivered all of my babies at home in MN with my dear midwife; I couldn’t imagine delivering in the camper with someone new. We finally decided that we would find and have appointments with a local midwife, in case of an emergency, and I’d also have visits with my midwife in MN over the phone. Then, when the time came, we would travel back to MN and I would deliver in the camper with my usual midwife. This worked well as we would be close to our parents and siblings when baby came. Everything was going well. I was due at the end of April, so April 6th, we packed up and set out for MN. It was such a sad time to leave Arkansas. Everyone was mowing their lawns in AR, but MN still had snow on the ground. Minnesota weather can be very unpredictable in April. We didn’t realize we were headed for a month of cold, windy winter.
Checking in on Baby
My midwives have always been very thorough with my vitals, tests and questioning, and also carefully palpating to check on size and positioning of baby. If there are any complications or concerns, I go in. Well, as the days went by and my stomach got larger and larger, my midwife was concerned. She was suspecting I had way too much amniotic fluid. Now I was at the end of my pregnancy and I had been starting and stopping labor for the past few days, but nothing kicked into gear. She made an appointment for a biophysical profile at a small nearby clinic. I remember the excitement we all felt that Wednesday morning that we would probably learn the gender of the baby. Little did I know, everything was about to change in a few short hours.
It’s a Girl!
There was my husband and I, along with my midwife and the technician. It was a small, comfortable office. We talked and joked as she began to push against my very full bladder. She quickly saw that this was a little girl! That would make 7 girls for us! The boys were really getting outnumbered. After a few minutes though, I could tell she couldn’t see what she was wanting. The technician started to invert the bed, so that I felt like I was upside down. She was trying to lift the baby up out of my pelvis. I could tell by the look on her face that she saw something was off. My midwife could see it as well.
A birth defect at this stage of pregnancy was the last thing on my mind
Now, the remote she had been using to get the bed to tilt wasn’t working properly, so she excused herself to get new batteries. A few minutes later and my midwife left to “check on her.” After several minutes of waiting, my thoughts kept pestering me… “did something seem off there?” Even now, the thought of a birth defect never entered my mind. They came back with the new batteries and continued the ultrasound for a few minutes when the technician said, “I can tell that you are going to need to go in to the hospital to have a better look, so I am going to stop the ultrasound now.” Could there be something wrong with the baby? I wondered.
Give it to us straight
In a blink we were standing in the hallway with my midwife when my husband said, “Give it to us straight. What’s going on?” She said simply, “It looks like your baby doesn’t have a brain.” What? How could that be? How could a whole baby grow without a brain? I wondered. I could feel her kicking and moving around. The baby was just so far descended already, I thought. “Let’s just go take a closer look,” she said. We made a quick plan on what location we would like to go to and we headed to the clinic.
Trying to Process a Birth Defect
I do not like extreme emotions and I seldom jump to conclusions. As we drove, I slowly started to entertain the idea that our baby had a birth defect. Probably not, but… maybe. Once we finally got into a room, I remember the doctor coming in. She began asking me all sorts of questions. I could feel her disdain as she tried to figure out why I didn’t have a doctor and hospital set up to deliver at and why I hadn’t had all of the recommended ultrasounds. She was visibly annoyed with me as I failed to mention that I sometimes struggle with asthma. “I’m just trying to help your kid,” she said. She asked my midwife why she had ordered the biophysical. My midwife mentioned that I had way more fluid than normal and the doctor said incredulously, “how could you tell that?” I could tell my husband and midwife were as mad as I was at her rudeness and lack of knowledge. She marked my file as having “no prenatal care” and “geriatric.”
Confirming a birth defect
Soon the technician came and everything was measured. The baby’s heart, stomach, femur, the amniotic fluid. Sure enough, the ultrasound showed my amniotic fluid index to be 45 cm (normal is 5-24 cm). Too much amniotic fluid is called polyhydramnios and can be an indicator of trouble. The technician said very little during the ultrasound. We would have to wait to hear results from the doctor. When the doctor came back in, she had a very different countenance. “Your baby has a birth defect. She isn’t going to survive,” she said. This couldn’t be real. Was I really here? Did she really just say that? We were told she was a girl. She had clubbed feet, she was very small, and she had no brain.
When a birth defect shatters your world
All of a sudden, my hopes and dreams came crashing down. I just remember feeling so much sadness. Every little baby has always been so precious to me. The tiny snuggles, the giggles, the toddling around, learning her personality… none of that would happen now. The doctor said that she could perform the c-section if we wanted, and asked if we could also have my tubes tied “while we were in there already.” I could not believe this woman. She had just told me that my baby won’t survive a birth defect, and now she is asking us to decided we are finished having children. I can only imagine she thought I was some hillbilly from Arkansas who irresponsibly has all these babies without any prenatal care or knowledge of modern medicine. Calmly, I responded, “my husband and I will discuss that, but it is not something we plan to decide right now.”
Switching Facilities
I began asking the doctor about blood transfusions (the fact that I didn’t want one if not absolutely necessary). She suggested a different hospital with a machine that recycles your own blood and gives it back to you. I jumped at that opportunity as I didn’t want this doctor anywhere near my surgery. She mentioned that we could schedule the c-section today or we could also wait a couple days. I could wait a couple days? She said that the baby was stable while she was inside, and I was healthy and stable, so a couple of days would be fine. Then, I thought of my other children.
Going Home
How could I tell them their baby sister, they were eagerly waiting to snuggle, had a birth defect? I needed to go home to them; I needed to look at their faces when I told them this news. Timothy’s birth had been so traumatic and the children didn’t get to meet him until he was released from the NICU. We couldn’t do that again. I wanted them to be able to say “good-bye” to their little sister while she was still alive; to feel her kicking at least one more time. Yes, for sure I needed to go home today and be with them… (click here for Part 2)
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