Cameron and I have been married for five years, and this year we decided it was time to start a family. We were ecstatic when we found out we were expecting! All throughout the first half of my pregnancy, things seemed to be going very well. I didn't have any major discomfort, and every checkup I had seemed to point to a healthy baby.
When I was 18 weeks pregnant, we scheduled an ultrasound. We were excited because besides checking on the baby's health, we were going to find out the gender. We went in and had an ultrasound on a Tuesday, where we were told we were having a healthy little girl. We were thrilled! We named her Caroline Grace.
The pictures they took during that ultrasound gave my OB and the radiologist some concerns, specifically about the development of little Caroline's brain. We got a phone call on Wednesday afternoon (the day after the sonogram) informing us of those concerns. They worked quickly to get us into a radiological specialist to confirm the issue. That happened Thursday.
The diagnosis was a neural tube disorder called anencephaly. Early in pregnancy, the neural tube, which is the beginning of the brain stem and brain, is supposed to close at the top in order for the main part of the brain and the skull (cranium) to form. In our case, this closure never occurred, so Caroline's brain and cranium never developed. As you can imagine, this disorder does not allow the baby to survive. It happens to approximately 1 in 1,000 pregnancies, and we happen to be the 1. It was not caused by anything we did, and it is unlikely that it would recur in future pregnancies. The likelihood of recurrence in families that have had one anencephalic baby is 2-3%. If we increase my folic acid intake for my next pregnancy (which we will), the likelihood decreases to about 1-2%. It just happened to us this time by random chance. We spoke to a genetic counselor when we received the diagnosis, and she said the absence of any other physical anomalies almost completely rules out a genetic cause for this diagnosis in Caroline. In other words, Caroline was physically perfect in every way except her anencephaly. We loved her despite her condition and believe she was "perfect" anyway.
Many anencephalic babies pass away through miscarriage or pre-term labor. The only difference in these terms is how far along the pregnancy is. Earlier in the pregnancy, usually sometime before the 20-some-odd week mark, it's considered a miscarriage. Later in the pregnancy, it's pre-term labor. The bottom line is, they pass away in-utero and are considered still born. The ones that make it close to or all the way to full term either pass away during delivery and are considered still born, or they pass away shortly thereafter. Most can survive only a few minutes or hours, while a few can manage a few days. This is all assuming that the parents of the baby don't choose to terminate the pregnancy at the time of diagnosis, which some do. We chose not to do that when presented with our "options."
At 28 weeks, I went into pre-term labor and delivered Caroline. She was 1 lb, 11 ounces, and 12 inches long. She was beautiful. You can see pictures in the "Pictures" tab at the top of the blog. She was born still, but we loved "meeting" her anyway. We got some beautiful pictures and will remember and miss Caroline forever.
This is absolutely not how we envisioned this pregnancy going, and the diagnosis was heartbreaking. We desperately wanted our little girl, and knowing we could lose her at any moment was a heavy burden to bear. We hoped and prayed that God would miraculously heal her and let us keep her here on earth for a little longer, but we also asked for His will to be done. His will was for us to walk this difficult path, and I pray that we have suffered well and given Him the glory through it all. We know Scripture (Romans 8:28) says that He works EVERYTHING out for the good of those who love Him and are called according to His purpose, so this will be turned to good somehow, even if we don't see it or feel it yet.
We are hurting, but not hopeless. We have wonderful family and friends that have rallied around us. God has blessed us with amazing fellow Christians to encourage us. This experience has changed our lives forever, and we will never be the same. We are clinging to the fact that God also lost a child, so he truly understands how we feel right now. We also know that, like God, we will be reunited with our loved child someday, and we can take comfort in that. Our goodbye is not forever.
The lyrics of an old hymn came to mind when we got the news of Caroline's diagnosis.
"When peace like a river attendeth my way,
When sorrows like sea billows roll,
Whatever my lot, thou hast taught me to say,
It is well, it is well with my soul."
We're doing our best to learn how to be at peace with this, and how to truly say that it is well with our souls.
God has most assuredly walked through this time with us, and we can feel His presence even now. We know some difficult days will come in the future as we mourn, but we have faith that we will make it through, and be stronger for it. To God be the glory, and may His peace and mercy and grace overwhelm us.
