Victoria Hope

Last Monday (January 10th), we got the chance to see our unborn baby again. I had an ultrasound at 21 weeks, which revealed a baby girl. The technician was able to get most of the pictures she needed, but our baby would not move her head in the right direction to get the head shots. I was scheduled for another ultrasound, and I went in on Monday (almost 25 weeks), hoping that she would be positioned correctly and willing to let them take her picture. While she never gave us a full shot of her face, she was in a better position to take the pictures of her head that they needed.

After the ultrasound, I went in for my routine check-up with my midwife. After a while she came in and told me that they'd found an abnormality on our baby's ultrasound. Our baby has a birth defect called an encephalocele, located in the occipital region (meaning the back of her skull--closer to her neck). This is a disorder similar to spina bifida--a neural tube deficiency. Our basic understanding at this point is that her skull failed to close properly around her brain, leaving a hole at the back of her skull where an external sac filled with spinal fluid, meningeal tissue, and/or brain tissue would form. My midwife was grim about the chances for our baby. She was very careful to make sure I understood that her chances of surviving the pregnancy were 1 in 5, and that if she did survive, she would most likely have neurological damage. In God's providence, a maternal and fetal medicine specialist (Dr. Hiett) was coming down from St. Vincent's hospital in Indy on his once a month to my doctor's practice on Friday, and we were scheduled to have a more extensive ultrasound with him.

Needless to say, David and I had a long and painful week from Monday to Friday. But even in our week of extreme uncertainty, God was faithful to us in many ways, showing Himself to us in this situation. We knew immediately that we wanted to name her before Friday, and as soon as possible. Her name is Victoria Hope, and we will call her Hope.

Victoria--for the victory that Christ has already had over sin and death, and the final victory that He will have in the end.

Hope--representing the hope that we have now that God will strengthen her and allow her to grow, and if not, the hope that we will have in heaven to meet her someday. Romans 8:24-25 is especially what came to my mind with that name.

As Friday came closer, we were able, through online research and talking to a nurse from Dr. Hiett's office, to hone in on two areas where we were hoping to get some answers:

1. Does Hope have more extensive physical abnormalities, such as a heart defect, or facial malformations? These could be indicative of a chromosomal disorder, and would make her chances worse.
2. Does Hope have brain tissue in the sac on the back of her head? While the size of the sac could very considerably, it is the contents of it that are most telling. Fluid and meningeal tissue are better, brain tissue is worse.


While Hope did not show us her face to look for facial problems, the doctor was able to see that she is otherwise healthy. She has 5 fingers on each hand, her arms and legs are the right length, and they move freely, not in a constricted fashion. Her heart also looks great. One of my favorite quotes from yesterday was the doctor looking carefully at her heart, and then saying, "Her heart is gorgeous!" We praise God this all these!

Dr. Hiett was also able to look carefully at her skull. He showed us the gap in her skull, and then the sac, which is about 1/4 the size of her head. He was able to see clearly that there is brain tissue in the sac. He said it was part of cerebellum. He basically refused to answer questions about what that could mean for Hope, deferring all answers to the neurosurgeon that we will meet with.

We did not get any more answers about what our baby's exact chance of survival is.

We will be going up to Indy this week for a more detailed ultrasound, hopefully a meeting with a neurologist, and possibly an amniocentesis. The amniocentesis is the decision we need to make this week that we are asking for prayer for. It is a procedure where they go in with a needle and take out amniotic fluid. They will get one of the baby's sloughed off cells out of the fluid, and analyze it for chromosomal disorders. Hope's chances of having a chromosomal disorder would be 50%, but we are hoping they are lower, seeing that we have 4 normal children, and that Hope did not have any other deformities that we would see. However, there is still a chance. The risks of the procedure are 1/300 that I would go into pre-term labor after the procedure. We are trying to weigh those risks against the benefit of the knowledge of a chromosomal disorder would be for us. While it would not change anything we could do for her now, or cause us to abort, it could have some implications for how we care for her in the first weeks of her life if she has a fatal chromosomal disorder. The cells take 1-2 weeks to analyze, so while we could do the test after Hope is born, if she will die soon after birth, we would like to know that beforehand so we can care for her accordingly.

Here are the things that I have taken hope and encouragement from:
*The doctor said several times that we are far along in the pregnancy. I don't feel that far along, so it surprised me. Upon reflection and some googling, we realized that most babies with an encephelocele miscarry before 20 weeks.
*Hope moves a ton. She doesn't feel any different to me than the other kids did. While the doctor would not say that this is a good sign, he did say that if she was not moving, he would tell us that she had an extremely small chance of surviving.
*Most babies with an encephelocele are aborted. For that reason, the information about after-birth treatment and chances is limited, and doctors naturally tell you the worst. We have hope for her, despite all the nay-saying of websites and doctors.


In the midst of confusion, pain, and uncertainty, we have felt the love of our church family through this week. As we started telling our family and closest friends, we received prayers, hugs, love, and offers of babysitting. We were asked to come to the monthly elder's meeting so that the elders could lay hands on us and pray for us. As the news is starting to spread further, we are again astonished at how many people are praying for us, and for baby Hope. We are so thankful for all of you, and we know that we would not be able to make it through this time without the love of a church family. And through all of you, we feel God's hand upon us. We know that He works through His people, and in your love and care for us, we know that He is loving and caring for us. Thank you for being a tangible example of the work of God. Our trust is in God, our hope for baby Hope lies in the power of God, and we believe that He works all things for our good because He loves us.