On January 3, Roy and I went in for a routine 18 week ultrasound and to find out the gender of our precious baby. I was still on winter break from school and Roy took the day off so that we could celebrate our appointment, go shopping for a little bit, and then prepare for our gender reveal party that night. We were so excited for this day and so anxious to see if we were going to have a boy or girl! Our ultrasound was going great and we were so happy to see our baby kicking and wiggling around (making it difficult for the technician to get good measurements...stubborn little one...I guess baby is taking after daddy in that area!) The technician had me moving around on the table and shaking my stomach so he could try to get good measurements. He was having an exceptionally hard time getting a measurement on our baby's head, saying the position was making it difficult. After a little while, he was able to tell us our baby was measuring just a little small overall, but he was 8 oz which was in the correct range. His heart rate was 150 and he was doing well as far as we could tell. The next sentence though is what changed our day. He also told us that "This little person presents some concerns for me." Trying to hold myself together, I reached over for Roy's hand but avoided eye contact because I knew that could cause me to break down, and I just said "Okay." He said the doctor would tell us more and that sometimes these concerns turn out to be worrisome but sometimes they don't. In all of this, the technician did not tell us the gender of our baby so I made sure to ask before we left the room. As we were getting ready to walk out, he told us we had a little BOY in there!
We had to return to the waiting room to wait for our appointment with the doctor. The waiting room seemed so full, and Roy and I were still doing our best to keep ourselves composed especially with all of those people around. We were trying to enjoy the fact that we had a son, but the one sentence from the technician was not leaving the forefronts of our thoughts. I sent a text message to my parents and siblings, letting them know something was wrong but that we didn't know anything else. After what seemed like forever we were called into a room to see the doctor where we had to wait for a while and thoughts were just running through my head. I remember telling Roy at one point that maybe this was why I was in special education. Maybe our baby had a disability and that's why I have always had a heart for individuals with special needs. He told me he was okay with anything - we saw the baby moving and heard the heartbeat and that's what mattered.
When the doctor came in, he told us that when they do an ultrasound they are looking at 20-something parts of the baby and sometimes they find something that is concerning, and that is what happened in our case. He told us that the ultrasound showed that our baby has "no brain and no skull." This birth defect is called anencephaly. He told us a little more about this diagnosis and I was trying to absorb as much as I could, while trying to manage being hit with this information on a day that we had hoped would be so joyous. He told us it was neural tube defect, and the neural tube did not close early on in the pregnancy. At one point, he asked if Roy and I wanted to be alone for a minute, but I immediately replied "No, I would rather just hear all of this information." I asked how could our baby have "no brain" but still be moving inside of me. He said he did have the lower portion of the brain (brain stem), but nothing that would allow for any sort of life. He assured us that even though they are unsure what causes anencephaly, that it was not we did or did not do. He proceeded to tell us the prognosis of our baby with this diagnosis. He said there has been no recorded case of any baby having sustained life with this condition. This obviously hit our hearts so heavily. He then told us our options knowing this new information about our sweet baby. We could decide to "terminate" the baby prior to 20 weeks in accordance with a state law, or we could carry the baby to term. Even if we decided to carry to term, he said our baby may be stillborn, he may take a few breaths, or he could live for just a few hours. He said we did not have to make the decision right then, but I asked what his medical recommendation would be. The doctor said that he did not have a recommendation, but that we had to be confident that whatever decision we made, that it was the right decision for us. After spending a lot of time with us, explaining and allowing us to ask questions, he told us we needed to have a high risk ultrasound at another facility and left the room to schedule that appointment.
Roy and I fell apart at that point - apologizing to eachother and just embracing eachother with all the love we had. I called my mom to ask her to come to the doctor's office but did not tell her anything at that point. A nurse came in and told us the hospital could get us in at 11:00...it was 10:10 and the hospital was 40 minutes away. We left the building immediately, but sat in the car for a little while - one to wait on my mom to arrive, and two to let everything sink in the best we could and talk about our thoughts. This ended up being mostly crying, which is what we needed at the time. When my mom arrived, I stopped her in the parking lot and Roy immediately left to tell his dad in person. He was going to meet us at the hospital with his aunt. I told my mom what they had found, but we didn't have much time to hug and cry as we had to be at the hospital shortly. On the way, I called my sister and dad as well as informed my brother. They were all so shocked and so sympathetic, but at a loss for words, as was a trend as we continued to tell family and friends in the following week.
At the hospital, they confirmed the findings from our doctor's office and explained everything to us once again. Hearing it the second time wasn't any easier than the first. We weren't sure what questions to ask at our doctor's office because no such thought had entered our mind prior to that appointment, so with the high risk doctor we were able to ask a few questions we had thought of on the way and our family asked some we hadn't thought of yet. One of the most important things I think I asked for my own peace of mind was if the baby was in any pain. I wanted to know that my son was not suffering and that he would continue to develop. The doctor confirmed both - he does not have any pain and will continue to grow. We also learned of risks/complications that may come up in the pregnancy. Aside from the typical pregnancy risks (high blood pressure, gestational diabetes, etc.) the doctor said the main additional risk was polyhydramnios. This is an excess of amniotic fluid because the baby may never develop or may have difficulty swallowing the amniotic fluid. The doctor said they could drain the amniotic fluid occasionally so there was no real risk to me. This doctor told us that we did not have to decide to be induced before twenty weeks, but instead that we could choose to deliver at any point. This terminology was so much more comforting to me. I could never "terminate" my baby, but I felt I could at least think about being induced early to reduce risks to my baby and me.
After leaving the hospital, the day seems like a blur - crying, talking through options, crying, telling family and close friends, cancelling the party for that night, crying some more, and researching. I was able to find some more information on the internet and highly recommend this website if you are wanting to find out more about anencephaly: anencephalie-info.org/ Some of the pictures are difficult to look at at first, but knowing the story behind these babies and that our son is expected to have a similar appearance, we find SO much beauty in these babies.
In all of the anger, sorrow, and confusion of this day, Roy and I decided we were still going to celebrate the fact that we were going to have a baby BOY. We iced a few of the cupcakes we had made for the gender reveal party and took pictures to enjoy the moment. We both knew throughout the day, that regardless of anything that was "wrong" with our baby, he was still perfect to us and we loved him just the same, if not more, than before our appointment. We had decided on a boy name before we even got pregnant - this "already sweet, already perfect, already loved" baby is our baby, Keagan David.
Praying continuously for all three of you!
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