Diagnosis: Rare Congenital Brain Defect:
Absent Cavum Septum Pellucidum
and complete Agenesis of the Corpus Callosum
By Lyn Wolfe
On December 12, 2012, my family was getting ready for the day early in the morning. Max was eating his breakfast and I was getting ready to leave for work. “Is it the end of the world today?” Kevin jokingly said. I asked about what the negative hype was about 12/12/12, kissed Kevin and Max goodbye and left for work. It was a busy Wednesday as usual. Soon after my change advisory board meeting, I got a phone call from my OB doctor’s nurse. She told me that Ronnie’s ultrasound showed possible absence of the cavum septum pellucidum. I had to ask for her to spell these words and she also fumbled to utter the correct spelling. She said not to worry and gave me a contact number to arrange for a level two ultrasound in either the Hillsboro or Portland facility. I thanked her and ended the call.
I felt an eerie coldness after that call. I tried to concentrate with work. I had to excuse myself and repeat myself as I tried to interact with my peer regarding releases that we were assessing that afternoon. I had to Google what cavum septum meant as I worked. Web articles were confusing. I came across ‘mental retardation’, words that shattered my calmness. I called to schedule the follow up ultrasound an hour after I received the initial call. My hands were shaking, my body was trembling, my tears started falling, I begged to have the earliest appointment they had in any available facility. I did not take a month or a two-week delay for an appointment as an answer. I was tactful, and pleaded for the earliest possible accommodation; I was granted an appointment for that same week on Friday morning.
By that time, people who had passed by my office cube, and around me, noticed my distress and were very concerned. I broke down. Barney, my manager, had to bring me to an available office. Babs, an office friend also saw me and asked to join us. I told them about the news. I was shaking uncontrollably. “That was only a preliminary feedback.” “That might just be a mistake.” These were the words that came from them, but I knew that there was something seriously wrong. I cried because I felt that I might lose Ronnie.
I then called Kevin at work. I told him about Ronnie’s ultrasound feedback and gave him key words, missing cavum septum, and details of our follow up ultrasound. I was crying the entire conversation. I knew that he was also panicked by the news. I tried to wrap up the day’s work but my head was in a daze. Flashes of losing Ronnie kept crossing my mind. My heart was pounding so hard.
December 14, 2012 at 7:00am, Kevin, Max and I were at Emanuel Legacy Fetal Medicine Clinic for a level two ultrasound. I tried so hard to be optimistic but the world seemed so noisy, it was slowly crumbling down. We all saw Ronnie, she was whole, she was complete; it was hard to understand that she could be incomplete. The technician confirmed Ronnie’s gender. She called the doctor back in the room and did another pass at her brain’s anatomy. Both technician and doctor stated that the cavum septum was there, “it’s there, it looks like it’s partially there” were their exact words. The doctor also said that the corpus callosum was present, and was pretty sure that it was there. She said it with so much uncertainty that I did not believe any of her words. I needed more information, more definite test results, I needed to know the truth from a steady and decisive voice.
We were given options for further testing and we agreed to go through a fetal MRI. The thought of possibly losing Ronnie was brought up. Kevin shed tears for the first time as he said, “she is my daughter,” how can anyone talk about our daughter this way? Max was there, sitting, listening, and not truly understanding what was going on.
We came home with not much information after that ultrasound. I had to drop off Max at pre-school, Kevin and I had to take that day as a normal working day. Nothing felt normal. I struggled to go through that day.
I cried on and off that weekend and spent the evenings until early morning searching the web for answers. The doctor from the Fetal Medicine Clinic mentioned that Ronnie’s cavum septum looked more like a teardrop rather than a rectangle shape. I had to know what was causing this space to be misshaped. I came across an article that detailed studies and cases of the agenesis of the corpus callosum. It read that a teardrop shaped cavum septum is a marker for the absence of the corpus callosum and is often overlooked by physicians. The article was written for physicians and it advises them not to fall trap of a misdiagnosis. I read case studies that had 73% and 70-85% risk of varying degrees of mental retardation for children with partial, complete and deformed corpus callosum. Mental and physical disabilities, seizures, I read words that I cannot associate with my child. It was painful.
We were hopeful that Friday night, Kevin and I spoke of raising a child with, perhaps, some visual impairment, an optic dysplasia from potentially a missing cavum septum. Saturday came, and after I had spent all that time reading articles, I was extremely angry. I kept saying that a cavum septum cannot just be misshaped without any other part of the brain causing this odd formation. Somehow, I knew that Ronnie’s corpus callosum was compromised. Sunday: I tried to be hopeful as Kevin was hopeful, but I had read so much, somehow the articles described Ronnie’s initial findings. She had a teardrop formation of the cavum septum. I knew that there was something else seriously wrong.
The fetal MRI was scheduled for December 17, at 6:00 am. My mom came from Los Angeles that Saturday which was good timing. She was there to care for Max and send him off to pre-school. Kevin and I left home very early and drove to Siker Medical in Portland. It was rainy, it was cold, we were quiet the entire drive. I felt death. I felt that a part of me was dying. Ronnie was 23 weeks and was moving actively as she had been since she was 16 weeks. While I dressed myself after the MRI, Amy, the doctor asked if I was ready to hear the results. I quickly dressed and said, “I want to know everything. I need to know all the details.”
The doctor asked what we knew at that point and I told her everything I knew. I mentioned that the previous doctor suspected presence of the corpus callosum. By my tone, I was asking more for clarity if that was indeed true. Kevin asked if Ronnie had an optic dysplasia with a possible absence of the cavum septum. The doctor said that they were able to take clear images of Ronnie’s brain and that her corpus callosum was absent. That was it. I somehow knew that that was it.
All I remember is that I covered my mouth as I wailed, “oh my God, my God, oh my God.” I collapsed in Kevin’s embrace. Kevin was in tears. I knew how serious this was and I looked at Kevin and spoke the words “This is serious.” The doctor rejoined us in her office and explained how this condition could affect Ronnie, it could result to severe mental retardation. At that time, though how painful and seemingly cruel, I knew what would be best for Ronnie. The doctor spoke words that made sense to Kevin, her opinion was to terminate the pregnancy, she had also lost a child. Kevin and I went straight to Emanuel Legacy, without any appointment, and begged to see a doctor, a geneticist, anybody who could help us.
My tears kept flowing as I embraced my belly, Ronnie, at the waiting room in Emanuel Legacy. I have given up hope. The world was very noisy but yet I clearly felt Ronnie’s movements and her heartbeat. We met with the doctor who confirmed absence of Ronnie’s corpus callosum after further review of her level two ultrasound. We spoke with the geneticist but I have already decided. I only spoke of interrupting the pregnancy and asked how they could help us.
I knew exactly what to do and that was to terminate the life of our daughter. I love her so much that I knew and never doubted that it was best for her. I did not question God, not once, why this happened to us. I am her mother and I thanked God for giving me the clarity of mind to decide what is best for her. I spoke all the necessary words and Kevin agreed. He trusted us. There is truth in the words of other grieving mothers, “I would rather live a life of pain than allow my child to live one moment of it.”
We left the clinic that morning and waited what seemed an eternity for an induction appointment. Kevin and I wept and slept briefly. I woke up with a panic and was told that the induction was scheduled for that coming Thursday, it was only Monday. I would lose my mind if I had to wait that long. I picked up the phone and tried to understand the delay. We had to wait for the insurance company to approve such a request, I did not take “wait” and “no” for an answer. I love Ronnie and it was painful to feel her every kick when I knew at that very moment that we could not have her. We had an induction scheduled for the following day, Tuesday.
Max was upset the night before my induction. He was sad because he had a nightmare the night before. He dreamt about black people breaking into pieces and dying. His words stabbed me like a dagger. We have not told him anything but somehow he felt that something so horrible was about to happen. Kevin explained that Max might be remembering the ultrasound and our tears as we discussed matters with the medical staff. I felt sorry that Max had to see all of that.
It was early Tuesday morning when we left home for the induction. I touched my belly after showering with so much sorrow. Kevin was there and we embraced each other. It will be a few hours or days, we will be seeing and saying goodbye to Ronnie. I knew that the induction process would be traumatic so we decided to leave Max with my mom. I did not want anyone else besides Kevin to see my physical suffering. This is something that you do not share and will leave painful memories.
It took 28 hours and 27 minutes. The nurse started the induction process on December 18 at 11:00am. I was given misoprostol vaginally with the maximum 6 doses of 4 tablets each dose administered every 4 hours. I ran a high fever the entire time. The doctor had to hold off the last dose to check if an infection was causing my fever. It was fairly uncommon to run a fever. I did not care anymore. A part of me wanted to die but a bigger part of me wanted to live for Max, for Kevin. I was quiet. I felt numb. The first snow came. I saw flurries from the little exposed part of the hospital window. I felt so cold, still so numb. I only asked for minimal pain relief and an epidural was administered on the 12th hour. I wanted to be lucid when Ronnie arrived.
After 20 hours, I was in physical pain and started feeling a deep sadness in anticipation of Ronnie’s arrival. By the 24th hour, I uttered the words, “We should not be here.” The nurse replied, “I know, it is not fair.” It was not about fairness. I did not question anything that could possibly have control of what was happening. All I knew was that I planned that December differently. My brother and my mom were home with Max. We should be with them to celebrate the holiday.
I had to push, for what I remember, almost 30 minutes. I cried, “oh my God” when I felt Ronnie was near. I was not prepared to meet her in such circumstances. I had my eyes closed, tears running down my face. I felt Ronnie’s arrival. I remember Kevin’s voice telling me that she was near. Kevin constantly wiped my tears and coached me as I pushed. I remember this birthing process with Max but with blissful anticipation of his arrival. This time, I was unable to place my emotions. I had imagined this meeting differently, joyous and not painful. It was so painful. I begged for them to call on the anesthesiologist to administer the normal dose of the epidural.
Ronnie arrived on December 19, 2012 at 3:27 pm. They placed her in a blanket on my chest. I remember saying, “please clean her.” Somehow, I did not still understand that she was not full term and that she would be leaving us soon. I was in disbelief that she was not healthy when she looked so complete, so beautiful. I was in and out of reality, I asked if she was alive and at that moment she reached out towards me and gasped for a tiny breathe. I wailed, “I am sorry…I love you…it will be alright.” I asked Kevin if he wanted to hold her and he quietly took her in her swaddle. I had to push a few times to deliver the placenta. I was so disoriented but I heard Kevin speaking to Ronnie. He was telling her that it would be alright, he was there to comfort Ronnie.
Ronnie died in Kevin’s arms. He told me that she gasped for breathe a few times, maybe five, and quietly passed away. The nurse checked for her heartbeat at 4:05pm and there was none at that time. Ronnie had passed away within 15 minutes of delivery. Her death was marked at 4:05pm.
I asked Kevin to give her back to me. I held her close to my face in an embrace. I was burning with fever and embracing her was all the comfort I needed. The chaplain came and blessed her. She was still in my embrace. I remember briefly opening my eyes and seeing Kevin and the chaplain looking down with sadness in their eyes. Kevin then took Ronnie to clean her. She is gone and nothing is the same again.
Kevin suggested inviting the rest of the family to visit that evening. I agreed and asked for my camera. I wanted to take photos of her. I wanted tangible memories of Ronnie. Kevin, Max, Ryan, VJ, my brother’s girlfriend, and my mom arrived at around 7pm. I remember Ryan greeted me with a kiss, but all I could see was Max. Kevin carried him in the room. I could not take my eyes off of him. I worried about him almost to a panic. I lifted him close to me and embraced him tightly with disregard of my IV. He was a different boy. He caressed my left arm with such a concerned look on his face. He did not look like a child but a concerned big brother to Ronnie. He looked at me and glanced over the bassinet beside me. His lips quivered at the sight of his sister but not a tear. I know that he was holding back his tears while I looked at him so intently with tears flowing down my cheeks.
I acknowledged my brother and my mom. I asked Ryan to take photos of Ronnie. While in the middle of some conversation, Max approached Ronnie and touched her face. We offered to have him cradle Ronnie and he agreed. I felt so nervous, I told Max to be careful not to drop her. I was still thinking that she was alive, trying to protect her from being hurt. My mom handed me Ronnie. I broke down in tears as I held her lifeless body.
That evening, when Kevin and I were left in the hospital, I took more photos of Ronnie. I asked Kevin why she had so many bruises. He had to remind me again that she was gone. Her body at that time was cold. It was five hours from her passing. I had to let go and say goodbye as Kevin did when she passed away in his arms. I did not understand. I thought I understood that she had left us. I think I had lost my sense of reality at that very moment.
My follow up doctor’s visit was difficult. I was there without a child in my womb. I had to embrace my belly for almost a month just to not feel cold. It truly felt empty and cold. Sometimes, I could still even feel Ronnie’s tiny kicks. How I miss those tiny kicks.
It has now been a little over a month since Ronnie’s death. I still dream about her. I look at her photos every single day. I cannot truly match how a beautiful child could have a life of pain from physical and mental disabilities. I do not understand. I had clarity before but all sense of reality and clarity has slipped so far from my understanding. I have to remind myself every day that Ronnie is gone. I am lost. The world seems so noisy. There is a calmness that only Ronnie could give me.