We found out we were pregnant with our 6th child and were elated. When we told our other 5 children they danced around the house singing, “We’re going to have a baby.” At the 23-week ultrasound the sonographer said everything looked great except that there was a spot on the uterus that they wanted to look at again. In truth, the doctor noticed that a structure in the brain, called the cavum septum, did not show up in the ultrasound and wanted to take another look, but did not want to alarm me.
I went back in at 27 weeks, assuming that everything was fine, just like the doctor had said the month before. The sonographer looked at our baby for the 2nd time and called the doctor in. They started looking very closely at the baby’s brain and talking about something being absent. They then turned to me and said that they could not find the cavum septum and that usually means that the corpus callosum is absent. I had NO idea what any of these structures were and understood simply that part of our baby’s brain was missing. The doctor immediately called a maternal fetal specialist who worked in the same hospital and I had an appointment with him an hour later. I called my husband and told him that something was wrong and went directly to a nearby chapel to pray.
I arrived at the maternal fetal specialist’s office and had another ultrasound. He, too, noticed the absence of the cavum septum and also agreed that our baby probably had agenesis of the corpus callosum and that one of the ventricles was enlarged. He said that, many times, fluid begins to build in the skull, creating pressure on the brain, and making it impossible to deliver the baby. He told us that some women have to decide between letting their baby die during a normal birth or risk having a c-section just to have a few minutes with the baby before the baby dies. I was also informed that this condition is usually linked with many chromosomal abnormalities and the baby may be found incompatible with life. The doctor suggested an amniocentesis right away, but I declined. He said he could get me in the next day if, after talking to my husband, we decided that we wanted to do something. We set up a follow-up appointment for 2 weeks and I left, completely blindsided by the events of that afternoon.
Within the next few days I did a lot of crying and asked for many prayers. Swarms of people prayed for our little baby. We also found out a lot of information about the corpus callosum and its function. We were slightly reassured by “Dr. Google” as we read about many people who do not have a corpus callosum but are still doing well. We were further encouraged to find that it is not usually a life-threatening condition when not linked with other conditions. I also contacted our pediatrician, who would be caring for our child after he or she was born, and he encouraged us not to get any more testing done and offered a lot of hope and peace. Prenatal Partners for Life was also introduced to me and I found much consolation in an e-mail I received explaining the negative side to prenatal testing and encouraging me to love this little baby as a gift from God.
Over the next months I continued going to the specialist whose predictions never came true. Our baby’s head never filled with fluid and baby grew and grew each time I went. This baby looked just like our other children in the 3-D ultrasounds and I fell in love with this baby. It was very bittersweet knowing that our time could be limited and he or she could be very sick, but I was so glad to find joy in the midst of this suffering. Finally, on May 15th our little baby was born. The children wanted to name her Rose Faustina Mary, and we agreed that she was a Rose. She had no trauma during labor and was delivered naturally without any complications. She was beautiful. The nurses asked us over and over, “Is your baby truly sick? Are the doctors sure?” She looked and acted like all the other babies in the nursery.
Our great pediatrician ordered an ultrasound of her brain, in which they could not see any sign of the corpus callosum. He then ordered an MRI, which would show definitively if the corpus callosum was partially absent or completely absent.
At one week old, I brought little Rose to Children’s Hospital for her MRI. Little ear plugs were taped to her ears and HUGE ear muffs were placed over her ears. She looked so tiny inside all of the equipment. Because she was so young they let her try to make it through the MRI without sedating her. She did a great job and they were able to confirm that she did indeed have complete agenesis of the corpus callosum. That was very hard news to receive. It was hard to hear over and over that there was something wrong with my sweet little baby. The pediatrician was pleased to report though that her pituitary glands and all of the other structures of the brain were completely normal. Praise God!
She is currently 3 months old and I can tell no difference between her and my other children. She is so very happy and babbles at us, she stares in wonder at her siblings, and is the center of attention. She is a complete joy! The day following her initial diagnosis while in the womb, I read the gospel story of the healing of Jairus’s daughter. In that story, after the people come to report that Jairus’s daughter had died, Jesus says to Jairus, “Do not be afraid, just have faith.” I read and recited that verse thousands of times throughout this pregnancy because of all the uncertainty that surrounded Rose’s life. We feel blessed beyond words and hope in God’s great love for us and for Rose. We do not know what the future holds for Rose or how her condition will manifest itself in her life, but we will approach it with hope and enjoy each moment.
