Obviously, this is not your average first picture, but I think it is really neat. The girls were conceived through in vitro fertilization on Sept. 27, 2002. This picture was taken 5 days after conception, just a few hours before they were placed into my uterus. 9 days later, I found out that I was pregnant (there was speculation that it might be twins due to the high levels from my blood test). My first ultrasound was on Oct. 30, 2002. I was 6 weeks pregnant. There were two babies with two heartbeats. We were thrilled that we were having twins, but still cautious. A little over a week later I became very worried, and just felt like something was not right. I called the doctor, and they brought me in for another ultrasound. Everything looked perfect and I was released to my regular OB, who I would see in 2 weeks. I had another ultrasound at 10 weeks, and then again at 13 weeks. Everything continued to look perfect, and at 13 weeks they took a really early guess at the sexes- they thought it was 2 girls.
January 13, 2003
I was scheduled for another ultrasound to check on the babies' growth, and this was the day that we should definitely find out the sexes of the babies. I was 17 weeks. Steven decided to take the day off, and we were going to go look at nursery stuff after my appointment and we were going to celebrate our anniversary a few days early (our anniversary is Jan. 16). About a week earlier I started getting worried, thinking that something was wrong. In my mind I had gone through all sorts of things that could go wrong with a multiple pregnancy (this is where being an OB nurse is not a good thing). It had never crossed my mind that something could be wrong with one of the babies.
Baby A's ultrasound was perfect. It was a girl and she was growing well, all measurements were on target. Steven and I had decided long before we were pregnant that our first girl would be named Hannah.
During Baby B's ultrasound was when our life as we knew it would change forever. Steven and I had both noticed that the technician seemed to be taking so much longer with this baby and she was printing off a lot of pictures. We both noticed that baby B's head did not look as round as baby A's. In fact her head looked almost oval. Neither of us said a word, but we both were getting concerned. As the technician finished up she showed us the sex of the baby, and it was another girl. Then, she wanted to show us some things that she saw during the scan. She showed us her head and then her spine. During this time she told us that our baby had spina bifida and hydrocephalus. Absolutely nothing could have prepared us for that moment. It was like somone had come and completely knocked the breath out of you. I at least knew what spina bifida was, but Steven did not have a clue. The next few days were filled with appointments to find out more about her diagnosis. About 2 weeks later we decided on Baby B's name, Amelia Grace.
After our appointments, we found out so much more about Amelia's spina bifida. For those that are not familiar with spina bifida, it is when the neural tube fails to close during gestation. It occurs within the first 28 days after conception. The lesion can occur anywhere along the spine, and depending on where the lesion occurs determines how affected the child will be. We found out that her lesion was at T-10 and was open to her sacrum. She would not be able to walk and would not have control of her bladder and bowels. She also had hydrocephalus, which would require a shunt to drain the excess fluid off of her brain. Hydrocephalus affects about 80% of children with spina bifida. We also found out that she had Arnold Chiari II malformation, which is a structual abnormality involving the lower brainstem, upper spinal cord, and cerebellum. About 85-90% of children with spina bifida have this malformation. Complications from this malformation only affect a small percentage of children, but they can be severe. We also found out that she had a spinal deformity called kyphosis, which is an outward curvature of the spine. We were told that most children with spina bifida have average to above average intelligence, but often have learning disabilities.
All that we could do for the next 4 months was wait. We would not know her true level of functioning, when she would require a shunt, or if she would even survive. We were scared and overwhelmed. We prayed a lot, cried a lot, and had faith that everything was going to be ok. We tried to prepare ourselves for what it would be like after the girls were born, but it is hard enough to imagine the impact that newborn twins bring. Much less, adding all of the medical issues that we would be facing with Amelia. Despite all of this, we were still so excited and ready to have our babies.
