This one is a struggle to write because it's still our reality, but I want to share our story.
It's a long one so bear with me y'all.
Starting from the beginning, my first trimester was pretty routine. Exhaustion, nausea (which was new because I didn't really have that with the boys), ya know all the first trimester things you get. All my blood work had been normal up to this point. Our first ultrasound looked great, the two appointments after that baby girl's heartbeat was good and healthy. During the first trimester I decided to have my first prenatal screening done through a company that works with my OB's office which checked for down syndrome, trisomy 13, etc. Their screening is just a little more in depth/accurate than the states and we were able to find out the gender! Everything came back normal with this test too.
Fast forward to the second trimester. At the end of April I had my second trimester blood panel done. A week later I get a call from my OB's office. I missed it by a few minutes but they didn't leave a voicemail. I called back and the front desk person told me they didn't leave any notes so she wasn't sure what they called for but she would have someone call me back. I thought it was really weird and I was telling my husband something wasn't right. Sure enough I get a callback from my doctor, and when I realized it was him my heart sank. Normally you get a call from a nurse if there's things they need to go over with you. He told me that some of my blood work had come back abnormal and that I needed to see a specialist. He told me our baby might have spina bifida or there could be something wrong with the environment she was growing in. I asked him to hang on so he could repeat everything to my husband. I got my husband on the phone and he started going over everything with us. He was telling us if she had spina bifida we had options, like surgery in utero or after she was born but there was only a few states in the country that performed this. Then he started to tell us if everything was okay with her it could be a problem with my placenta not functioning properly and she might have to come out early.
Y'all, it was like my whole body went numb and I just couldn't process what was being said. At the time we didn't have a lot of questions because we were still in shock. When we got off the phone I lost it. I was hysterical, shocked, scared. My husband and I took a couple of hours to process and then called back with more questions. Basically just asking for it to be explained better and what we were looking at. He explained to us the levels that were elevated and how all of that works. It was gibberish to me, but it was my AFP levels that were elevated. There wasn't much he could tell us because he needed more information than what we had. He was very open and honest and told us given how elevated my AFP levels are, it was unlikely that there wasn't something wrong. He put in a referral to a specialist and we just had to wait for them to contact us. I called the specialist the next day and they hadn't gotten the referral yet so I reached out to my insurance company and had them push the referral. Unfortunately that didn't help. The specialist had a process they had to go through and told me it could take up to a week for the doctor to review and approve my referral. I got the call from my doctor on a Monday, the specialist reached out to me on that Thursday to schedule an appointment but wasn't able to get me in until the FOLLOWING Thursday.
When I say this was the longest 10 days of my life I'm not kidding. My husband researched spina bifida, which I chose to stay away from, and I researched on mom forums for people who had high AFP levels. We came across so much information that I didn't know what to think. I read so many stories of women who had gone through this and their baby turned out to be okay but they ended up with complicated pregnancies, like delivering baby early, preeclampsia, growth restriction of the baby. Some women did have scans where it came back that there was a birth defect, and some women even lost their baby. All kinds of stories. The unknown of it all was the hardest, scariest part. When my husband would say things about spina bifida I would just ask that he didn't tell me anything anymore, that we would just cross that bridge when we got there. Not that we would love our baby any less if that were the case, but there are different kinds of spina bifida. Some cases your child can live a somewhat normal life, and sometimes that's not the case and it can be fatal to your child. That just wasn't something I could bear to think about. I was already terrified of losing my baby. No one ever likes the thought of that but all I could think was, "she has a name, she's a part of us, part of this family. I can't imagine her not being here." I cried every single day until I had my specialist appointment. It was like I had no control. I would tell my husband I felt like I didn't know how to function at the time. I just laid around and cried. There were a couple of days I was literally so sick to my stomach and overcome with anxiety I was throwing up. I felt so helpless for my baby girl because there was literally nothing I could do.
Thankfully I had a 20 week anatomy scan scheduled before we had found this out and it was a couple of days before I was meeting with the specialist. At this ultrasound I explained to the tech what was going on. They aren't allowed to tell you much and she told me she wasn't a radiologist but she was able to give me a general idea that baby girl looked healthy to her. Spine looked great, brain, heart, everything that they look for on the baby's anatomy seemed okay. This gave us a little bit of hope but I wasn't ready to let my guard down because I had been told the specialist will do a much more in depth ultrasound than the scan I was getting at 20 weeks.
Finally our appointment rolls around. Unfortunately I had to do this alone. They aren't allowing visitors at the moment, just the patient. Talk about feeling all of the emotions. First you meet with a genetic counselor. She went over everything that could be wrong with my baby and told me we had a 1 in 8 chance of something being wrong. She talked about surgery and things we could do if something came back abnormal, she even went on to talk to me about termination. While I understand this is their job to make you aware of everything that could happen, I was totally thrown off by this. I could just feel the overwhelming feeling of anxiety and fear getting worse. She told me I had high AFP levels and given those levels they were very concerned. She also said that if there was nothing wrong with the baby it could be something like a low functioning placenta. After meeting with her I went back to the lobby and waited to have the ultrasound done. I was so nervous and scared. They called me back for my ultrasound. The tech was great, she walked me through everything. What she was looking at and that things looked great for our baby girl. Then the doctor comes in, she didn't even look at me. She walked right in and went straight to the ultrasound machine. She didn't introduce herself until she started the ultrasound. She was basically just looking over everything again for herself. When she was done she told me that the baby looked fine but my levels were high so she's still concerned. She said when levels like this are elevated and the baby turns out to be okay they start looking at the placenta. She told me a list of things I was at risk for and said she'd see me in 8 weeks and we'd go from there. I left feeling a little more confused than when I went in because she didn't explain things very well. It was the worst experience.
Thankfully, my OB has been a rockstar through all of this and went over my results over the phone with me. I also had an appointment with him shortly after that ultrasound so we were able to go more in depth with the results. He told me I was at risk for preterm labor, preeclampsia, growth restriction for baby girl (where my placenta stops providing all the nutrients she needs and she falls behind in growth), and low birth weight. He said these things typically don't start to happen until later on in the pregnancy and that he was going to have to watch me closer than someone who has a normal pregnancy. He was very honest with me and told me these next few months are going to be challenging but he was going to be there whenever we needed to answer our questions. We've been so thankful for him through all of this. We really feel like he has mine and our baby's best interest.
I have an ultrasound at the beginning of July with the specialist to check on her growth and to double check everything to make sure she still looks healthy. My OB said if this ultrasound is okay and she's growing the way they want her to, he will start monitoring me and baby girl at the hospital twice a week starting at 32 weeks until she's born. If she's not growing how she's supposed to, or something comes back abnormal, I'll have to start being monitored sooner and she may have to come out earlier than expected. He's also going to get with my specialist after the ultrasound and see if I need to be induced a little before my due date instead of letting me go into labor on my own.
So that's where we're at right now. It's just a waiting game and it's one I don't want to play anymore. This has been such a scary and trying time. We still have such a long road ahead of us and I honestly cannot wait until she's here. That's when I'll feel better.
I will definitely be updating y'all throughout the rest of our pregnancy.
Thanks for reading, y'all 💜