We were overjoyed to find ourselves expecting in November of 2007 as we had just experienced an early miscarriage the month before. This pregnancy with Reagan was normal, uneventful and without any complications. This was our second child as we already had a 15 month old girl, however with this pregnancy I seemed to worry more than with the first. Not sure as to why at the time, but I continued to pray for a healthy baby and pregnancy as I did with our first, but even more. When we had our sonogram to find out the baby’s sex, the Dr. was astounded at the activeness of the baby, saying it was the most active baby he had ever seen in the womb. This calmed my fears a bit, however I do remember saying while seeing the sonogram “wow..that baby’s head is big” but thinking to myself, they all look big on a sonogram. The Dr. didn’t note anything wrong with measurements.
Reagan was born by way of a scheduled c-section on July 30, 2008. She looked perfect to me, another beautiful little girl, which we thanked God for. While in the hospital, we were astounded by the way she slept, it was wonderful, she slept most of the time, allowing us to rest. She would of course awaken to eat but it wouldn’t be long before she would be back to sleep. I thought to myself that this baby was going to be easy!! We couldn’t even rally her up to get her eyes open for her newborn pictures, so she slept through them. After we got home, my mother made the comment that it worried her how much she slept. Something didn’t seem right to her.
At our 2 week appointment with our pediatrician, Dr. Walter B. Kilby, he noticed that her head measurements were rapidly growing in comparison to the measurement at birth, as well as a slight bulging of her soft spot. He was concerned, but advised that he would keep an eye on it and if need be he would refer us to a specialist. At our next appointment, he advised that he was still concerned as the circumference was still climbing and that her soft spot was continuing to bulge, and referred us to Dr. John A. Jane Jr. at UVA. We ended up seeing Dr. John A. Jane Sr. as his son, was out of the office for a few weeks, and it was an urgent case that they wanted seen right away.
Our pediatrician indicated some various conditions that it could be, such as Crouzon’s Syndrome, Hydrocephalus and a few other conditions that I cannot remember now. After researching these conditions, I was scared. It “seemed” that hydro was the lesser of the evils, I prayed to God that if something was wrong, that it would be hydrocephalus as it again “seemed” not as bad as the others.
We had a rapid MRI scheduled for September 27th 2008, and were advised on September 30th, that there was fluid in the ventricles and they wanted to do a sedated MRI to get a better look at things. This was scheduled quickly and on a Saturday as they felt it was urgent. During this time we were relying on God’s grace and strength from Him as we knew that we could only rely on Him to bring us through this difficult time. In looking at my child, I couldn’t see that anything was wrong, part of that being denial, since I didn’t want her to go through this as I didn’t want to, either.
After the results from the second MRI, we were advised that Reagan had hydrocephalus due to Aqueduct Stenosis. The duct leading from the third ventricle to the fourth ventricle was forked, so it was not allowing the flow of cerebral fluid to drain correctly. Dr. Jane Sr. and his team advised that they did have a procedure called “ETV”, where they would poke holes in a membrane in her head, however because of her age; they advised that she was not a candidate since babies her age didn’t have a very good success rate with this procedure; so they decided to place a VP shunt. Her shunt placement surgery was scheduled for October 10th 2008.
After surgery, you could tell an immediate difference in her head shape, everyone that was coming in to the room to see her was amazed at the difference from before surgery. This has been her only surgery so far. Her neurosurgeon, Dr. John A. Jane Sr., is thrilled with her remarkable recovery and progress since her surgery. He has said that the differences in the MRI images before surgery and after are the best he has ever seen. We are extremely thankful for God’s graciousness in this fact; however we do fully understand that shunts can malfunction at any time, as well as many other complications such as shunt infections due to infection in the cerebral fluid itself.
Reagan is happy and active child who will soon be three years old. We still cannot believe how far we have come from the first day we learned she had hydrocephalus. She is such a joy for our family, and I am impressed every day at how smart she is. We still thank God for her every day, and the lessons she teaches us through what she has gone through in her little life.