An Update on Caroline Grace

I have already sent out lots of emails and posted this information on facebook, but I wanted to post it here so it's easy to find in the future. I'm simply pasting the email I sent out here. I think it says everything best for now. If you're interested, Cameron has started a blog dedicated to our journey with Caroline. You can find it here:
http://carolinesgrace.blogspot.com

In the next few days, I may start my own blog about this process. We decided it might be nice to have our own blogs so we can express what we'd like and have our own outlet. I'll let you know if/when I decide to do so. For now, the email:

To Our Wonderful Friends,

As many of you probably know by now, Cameron and I had an ultrasound on Tuesday, where we were told we were having a healthy little girl. We already 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 informing us of those concerns. They worked quickly to get us into a radiological specialist to confirm the issue. That happened Thursday.

The diagnosis is 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 is physically perfect in every way except her anencephaly. We love her despite her condition and believe she is "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 obviously chose not to do that when presented with our "options."

What this means for us:

I am currently 18 and a half weeks pregnant. I'll be 19 on Monday. I am now considered a "high risk" pregnancy. At any time between now and March, my original due date, we could lose our little Caroline Grace. If we make it to March, we might have her for a few hours or days. But, barring a miracle, we will lose her at some point. We just don't know exactly when. This is absolutely not how we envisioned this pregnancy going, and the diagnosis is heartbreaking. We desperately want our little girl, and knowing we could lose her at any moment is a heavy burden to bear. We hope and pray that God will miraculously heal her and let us keep her here on earth for a little longer, but we are also asking for His will to be done. If His will is for us to walk this difficult path, then I pray that we can suffer well and give 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 are rallying around us. God has blessed us with amazing fellow Christians to encourage us. This news 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 underst

ands 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 will not be forever.

The lyrics of an old hymn came to mind when we got this news.

"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 is most assuredly walking through this time with us, and we can feel His presence even now. We know some very difficult days are coming in the near future, 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.
We greatly appreciate your prayers and thoughtful words. It is a great encouragement to know we are loved by so many, and that they will be praying for us as we go through this. I'm sorry to send this news in an email, but I hope you can understand that making a lot of phone calls to tell this story repeatedly would be very difficult for us right now. But we wanted you to know, so this was our best option. God bless you all, and thank you for your continued prayers as we make our way through the next several months. We love you all.



For God's glory,
Cameron and Emily