Clara’s Story

Two days after Mother’s Day, 2015, I found out that I was expecting my third child. This number requires a little clarification, because although this was my third child, it was to be my second pregnancy. My oldest son is actually my step-son. Now 12, I have been a part of his life since he was 5 years old. He feels like my son, and so he is. Simple as that. My youngest son, my first pregnancy, is now a vibrant, baseball loving 3 year old. Making this baby my third child.

This pregnancy was no surprise, my husband and I had been trying for another baby, but I did not think that I was pregnant yet. All of the early tests that I had taken had come back negative, even up to a day or so before I expected my period (when accuracy rates jump considerably). Day 1 of my expected period came and went, however, so I took another test and there it was -positive.

I was THRILLED. Giddy, I decided to tell my husband in a fun way, since I think I told him about our first baby via text message. Ha. My husband and I are beer nerds and so I made a fake bottle label in order to announce it to him. I came home, said I’d come across a rare brew and had brought one home for him. Then, I handed him the bottle, labeled:

 Bauer Baby Pale Ale
Brewed in the belly of a 30 year old woman

He laughed. I laughed. We hugged. Everything was just as it should be.

Fast forward several months. I was 20 weeks pregnant and we are heading to our anatomy scan, both of our sons in tow. The oldest was excited, but decidedly awkward about anatomy scanning and reproductive body parts in general, as 12 year old boys will be. The youngest was bouncing all around, barely able to contain his excitement and curiosity. His joy about the news that he, too, would soon be a Big Brother, was palpable. He had spent the last month kissing my belly and declaring mom-puddle inducing things like, “your baby is so cute, Mama!” or “Mama, I just wuv our new baby.” Our youngest had been declaring for weeks that he believed the baby to be a girl, as did pretty much everyone else that we knew, including us. We all just knew.

The ultrasound tech was the same one who had done our early scan, at 6 weeks. The same tech who had first played our baby’s heartbeat for us, who had first confirmed that, indeed, our 3rd child was safely growing inside me. We were the first appointment of the morning and so the gel had not yet been warmed. Apologizing for the cold, he squirted a dollop on my belly and said “Let’s go ahead and just get the gender out of the way, okay?” I think he could sense our tension and excitement and it was, perhaps, a little too early in the morning for so much giddiness for him. We agreed and, faster than I could believe, he placed the instrument on my stomach, tweaked the angle slightly, glanced at the screen and said “Yep, it’s a girl!”

I cried. I laughed. I did both at the same time. I will never forget the look on my husband’s face as he processed the information that he was going to have a daughter. The prospect exhilarated and intimidated us both. We, the parents of stereotypical, rowdy, train and baseball loving boys, would soon have a girl. We, staunch feminists, were about to be responsible for teaching a young woman how to navigate a world where being a woman is often a challenge. Immediately, my mind was consumed with things like where exactly I stood in the great Barbie debate (yes, such a thing exists in my mind), and at what age would it be appropriate to teach her that she should only shave her legs and arm pits if she wanted to and not because she felt the need to conform to society’s, misogynist influenced, standards of beauty and, oh damn, I am SO GLAD that a very femme co-worker taught me to French braid hair last year, because if this little lady is anything like me, she is going to have hair for days. Speaking of hair, I hoped that she would be brunette, like me, because both of my sons have their Father’s blue eyes and platinum blonde hair, despite my brunette hair and hazel eyes being considered more dominant traits. I decided that it would be absolutely charming to have a family where all the boys were blonde and all the girls, brunette. Like a modern day Brady Bunch. Silly thoughts, all of them, and yet I relished every single one.

All of this, and more, raced around my mind throughout the rest of the scan, which went along as expected. The following Tuesday, however, it all changed. I got a call in the afternoon from my beloved OB. This man is the nicest man to ever wear a white coat and I can hardly imagine anyone else caring for me during a pregnancy or delivering my children. His, usually kind, voice was tense and rehearsed. “Hey kiddo, I just got your ultrasound results from over the weekend and… they found something… there’s something they want to take a better look at.” I remained silent, hand clutching my swollen belly, heart caught in my throat. “How do I explain this… you see, the baby’s head is separated into 2 ventricles and, one of them might be larger than it is supposed to be. We need to get you in for a more detailed ultrasound, called a Level II scan. Can we get that scheduled?” Meekly, I agreed. I worked up the nerve to ask a few questions, but could not determine much from his vague answers. It seemed that what we were dealing with was called Ventriculomegaly, and it could be nothing, or it could be the worst thing. I resolved to find comfort in this wide range of possibilities and spent the next 6 days in a sort of trance. I did all the things I was supposed to do, while suppressing a fear in the pit of my stomach. A fear unlike any I had felt in my life.

Our Level II scan was scheduled for the following Monday with a High Risk OB at the hospital where I delivered my youngest son. The same hospital that I was scheduled to deliver my daughter at. Nervously, we went in and met our ultrasound tech, who was very kind and encouraging. She began the scan, showing us the baby the way they usually do. Finding feet and hands, showing us her profile. We watched our daughter move around in my womb, stretching this way and that. I spoke up every time that I felt one of the kicks that we also saw. Feeling them and seeing them at the same time has always been something that I enjoy, a sort of confirmation of the realness of it all. The tech went on to check some specific measurements, as she was supposed to, and suddenly became very quiet. She hastily printed off some photos for us, shoved them into my hand, and left the room, explaining in clipped words that the doctor would be in shortly. Fear bubbling in my gut, I looked at my husband. He squeezed my hand and reassured me that it would be okay.

Moments later the doctor entered. He was kind, soft-spoken and… somewhat awkward. This awkwardness became understandable as things progressed, and ended up endearing him to me in the end. Taking up the ultrasound wand and placing it on my belly, he said with frankness, “This is the baby’s head. Does it look like a lemon?” We thought perhaps that he was going to tell us some joke, or tease us about the funny shape of our baby’s head. Her head was indeed shaped almost exactly like a lemon, and so we agreed that yes, it did look like a lemon. I chuckled nervously, waiting for a punchline that never came. Instead, he was quiet for a moment before saying, “What we are seeing here is what we call Lemon Head/Banana Head.” He then showed us her cerebellum, which should normally have the shape of a barbell. Instead, it was compressed against the back of her skull and very misshapen, having the appearance of a banana. He continued to look at the baby, saying nothing. We held our breath, knowing that something bad was coming, but having no idea yet what we were dealing with, as he had not truly explained. Eventually, he said that he needed to look at the baby’s spine because, these lemon and banana shaped malformations are indicative of Spina Bifida. I was in shock. After some work manipulating the baby to lay in a better position, he was able to see her spine and confirm our worst, and I believe his worst, fears. Our daughter did have Spina Bifida, but in addition to that, she had the worst kind, Spina Bifida Myelomeningocele. Basically this meant that her spine had not completely fused, and in addition to that, her spinal canal was exposed, leaking cerebrospinal fluid, and pulling down on her brain and brain stem. This downward pulling is what causes the banana shaped malformation in the cerebellum, called Arnold Chiari II malformation, and also causes the excess fluid to build and become trapped in her ventricles, called hydrocephalus. Her spinal malformation began somewhere around the belly button, and continued all the way down. It appeared as though her pelvic bone was not even connected to her spine. Immediately, our doctor informed us that he did not believe our daughter would ever walk, or have voluntary use of her bladder and bowels. My husband, choking back tears, immediately said “That’s okay. I will carry her to the ends of the Earth.” I sobbed. He was right, he would. I would. We would. We would carry her anywhere, do anything for her. We were sad of course, but undeterred to learn of her physical disability. I looked to my husband and said, matter of factly, “We’re going to need to find a 1 story house.” “Yeah”, he nodded, “a ranch style, or something.” For a short moment, I felt okay. We were going to deal with this. Being in a wheelchair is not a problem. We would learn to change her catheter. Learn to manage her colostomy bag. We would build accessibility ramps to the moon for her. There was so much that we didn’t understand, and I like to think that our stubborn positivity was endearing to our doctor, but the truth is that it probably tortured him. He wiped the gel off of my stomach, handed me some tissues and said he would meet us in a conference room.

The room was stark and lifeless. We both hated it. Our doctor entered and I noticed immediately that his expression was strained. We continued our relentless positivity as he tried to explain to us exactly what we were dealing with. There was so much to explain, so much we did not understand and we had difficulty taking it all in at that moment. Now, I feel for him. What an awful thing to have to tell people, particularly when those people seem so hopeful and naïve, which we were. What had appeared first as awkwardness in his demeanor became something else as we spoke to him. It became his humanity.

Finally, we let our minds step away from the focus on her physical disability and we started asking questions about the prognosis of her cognitive and neurological function. Those were the questions that changed it all. Our doctor explained that Spina Bifida (SB) can be caused by a genetic mutation (conditions like Down Syndrome, Patau Syndrome, etc. are often linked to cases of SB) or it can be a simple physical anomaly. A fluke, if you will. It is believed that a lack of Folic Acid in the mother’s diet can also be linked to cases of SB, but I have been taking a pre-natal multi vitamin every day for somewhere around 5 years, so this is unlikely the cause in our case. If our baby had one of these chromosomal mutations, it would give us a very clear picture of what her cognitive abilities were likely to be. For this reason, he recommended that we do a particular blood test which would screen for a wide number of chromosomal abnormalities. We agreed and continued to ask additional questions. (Results from that test eventually came back all in the clear, revealing that our particular case of SB is likely chalked up to a rare, purely physical deformity). He explained that, without one of the chromosomal abnormalities, it would be difficult to determine the exact level of neurological damage, until after she was born, but that the cerebellum malformation and hydrocephalus would undoubtedly have an effect on her. He explained that the hydrocephalus would inhibit her brain development. Basically, the more that the fluid continued to build in her head, the less space for her brain to grow. He told us to go home, read about it all, do some soul searching and call him with questions.

We did just that. We also cried. We cried so, so much. We held each other and promised to listen to each other and to be honest about what we were thinking and feeling. My husband was determined that, no matter what happened, we would come out stronger. I took comfort in his positivity, as I felt like the ground had gone out from under me. Without really saying the words though, we both knew what question all this research was trying to answer. Would we proceed, or would we end the pregnancy?

For our entire adult lives, my husband and I have been in agreement about the Choice debate. We are absolutely Pro-Choice. We believe wholeheartedly in a woman’s right to choose and in the protection of and ensured access to safe reproductive healthcare for women and men alike. However, we have also always agreed that we would never terminate a pregnancy. We never dreamed that anything could be so wrong as to drive us to such a decision. How arrogant we were. The implication of this position is that we believed that we could handle something which someone else could not. It implied that it was okay if you couldn’t deal with it, but that we definitely could. Suddenly, our entire belief system was called into question. That we were even considering terminating our pregnancy was painful to us, but we were considering it.

We spent the next 24 hours voraciously reading about Spina Bifida Myelomeningocele, Arnold Chiari II malformation and hydrocephalus. When reading and learning about SB, it is important to compare apples to apples, as there are a wide range of SB cases, some very mild and some very severe. There are a number of stories out there about children who were born with SB and who are living relatively normal lives, thriving even. However, most of those babies (well none actually, that I was able to find), had cases quite like ours. We began to learn about the consequences of her cerebellum malformation. This included things like difficulty swallowing, breathing irregularity, changes in the function of the throat and tongue (read: difficulty eating) and much more. Additionally, her level of hydrocephaly meant that the space in her head which was reserved for her brain to grow into, was restricted. Hydrocephaly due to Spina Bifida Myelomeningocele can be expected to increase as gestation continues, further restricting brain growth and often resulting in an early induction of labor and delivery, so that the baby can receive a shunt to drain the fluid and relieve the pressure in the head. After much reading and research, I made a call to our High Risk OB to ask some more informed questions about our prognosis. He confirmed our worst fears. The extremity of her SB malformation, cerebellum malformation and hydrocephaly meant that she was basically guaranteed to have some form of brain damage and impaired cognitive function. The severity was truly uncertain until after birth, but in his opinion, it would be rather significant, to the point that it threatened her likelihood of survival. I learned that she would be in surgery immediately after birth (once to close the spine and another to place a shunt in her head) and then, depending on her level of brain function, would likely be on some type of support in order to survive. From there the future was uncertain, but the prognosis was stark. We knew then what we had to do. Knowing all that we knew, and then being told that her disability was such that even her survival was uncertain, we determined that we would end the pregnancy. We could not bring her into a short life of pain, and we could not put our children and ourselves through that experience. There was another option, but it was the hardest decision that we have ever made in our lives.

This choice is not one that either of us ever expected to make. Our early arrogance in this matter was a slap in the face. I felt like a foolish child, testing fate only to find its bite every bit as fierce as its bark. The next few days were a torture. I could still feel my daughter moving inside of me. I will never be able to properly describe the anguish of that feeling. Our insurance company has a Catholic directive and so terminating a pregnancy is only approved in cases where the mother’s life is in danger or where the baby is determined to be incompatible with life outside the womb. This meant that getting our surgical abortion scheduled was a nightmare, with many hoops to jump through and obstacles in our way. We originally had an appointment for the following Monday, at a local hospital, but on the Thursday before, our insurance decided that we needed to go somewhere else, to a clinic in Chicago. This was a sort of good news, because we learned that it meant our case had been personally reviewed by the Medical Director of our entire, major U.S. insurance company and that it had been decided that our baby’s diagnosis was to be classified as a Lethal Fetal Anomaly, and thus would be approved and covered by insurance. This was a second opinion, and one confirming what we already believed to be true, that she would not only have had a miserable sort of “life”, but that she was very unlikely to have survived at all. Forcing a woman to carry a child to term, only to deliver it to its death is a special kind of cruelty. Thankfully, it is not one that our insurance company believes in. What’s more, at least for the time being, the choice to not have to suffer this terrible fate is currently protected by our government, despite the recent and ongoing attacks by people who really, truly, do not understand.

In the state of Illinois, late term pregnancy termination is legal up to the point where the fetus is considered viable. This can be anywhere between 22-24 weeks and each clinic or hospital has its own policies and cut-off dates, within this range. 3 days after our diagnosis, a Thursday, I was exactly 22 weeks pregnant, and dangerously close to being outside of the legal limit.

I called this new clinic on that Thursday afternoon to make an appointment and was told that, due to where I was in my term, I needed to start the 3 day procedure on that same day. In 2 hours, to be exact. I made the appointment. Since the initial diagnosis, I had been in a sort of business-like state. My husband, since we made the decision to end our pregnancy, was already grieving. He was distraught, and in shock. He could not feel her move, though. To him, it was almost as though she was already gone. I on the other hand, still feeling my daughter move inside me, could not grieve her yet. I willed myself into a sort of numbness to cope with what I knew was coming. I was solely focused on getting everything done and unraveling the knots of red tape that our insurance company was attempting to wind around us. In hindsight, I realize that I was in shock.

I scheduled the first appointment of my 3 day procedure and, panicked, called my husband to frantically explain. He swiftly arranged childcare for both of our children andflew from his office (yes he was at work, yes that is crazy, yes he was in shock), to pick me up and drive me into the city.

2 hours after making the initial phone call, we arrived. The clinic was in an office building on the North side of Chicago. It was much like a doctor’s office, except that it seemed a thin blanket of melancholy shrouded every surface. The staff, though, wasincredible. I have said repeatedly in the days after how grateful I am to have been surrounded by such kindness at the clinic. One nurse, in particular, was with me on all 3 days of my procedure. She talked to me about my glittery nail polish on the first day, distracting me from the pain of having laminaria inserted into my cervix, to cause dilation. On the second day, when my cervix had not quite dilated to where they wanted it to, she wiped the tears from my eyes as I cried out in pain from the manual dilation that they had to perform, in order to insert still a greater number of laminaria into my cervix. On the third, and final day, she placed my IV and then moved on to sweetly touching my cheek, as the anesthesiologist spoke softly to me before putting me under. I vaguely remember telling them all that they were angels. I am certain that they are kind to everyone who enters the clinic, but it was in my chart that we were sadly ending a wanted pregnancy, losing a very much wanted baby, and every single member of staff that I made contact with at the clinic expressed their sympathy for our situation. They showed such kindness and compassion throughout the process. I will never forget them.

That Saturday, as we left the clinic for the final time, there were protesters. Amazingly, we witnessed even further kindness in the form of “clinic escorts”. Volunteers, wearing pink vests, whose sole purpose is to keep the protesters a reasonable distance away from the clinic, and provide an encouraging arm and face for people coming and going. These men and women are heroes in pink vests instead of capes. What they do is brave, selfless and so appreciated.

The day after the procedure I began to have trouble breathing. My husband took me to the ER, and after CT scans and EKGs it was determined that I was just sort of freaking out. Obviously not a medical term, yet no less accurate. The kind ER doctor on duty patted my leg and said “You have been through a lot. I’m going to write you a prescription for Xanax. I want you to take it, and try to rest.” I was still in my emotionally numb state, at that time, but it had begun to wear off. I think my difficulty breathing was a physical manifestation of my emotions flooding back into my body. They pressed upon me like a mountain, settling their vastness directly on my chest.

Today, it has been 18 days since my daughter, Clara, left my body. We had been uncertain about naming her because choosing to give her a name felt like we were acknowledging that we did, in fact, lose a child. We were afraid of making that acknowledgement. However, as time got on, I realized that without meaning to, I had named her. I had been referring to her in my mind as Clara, and I very much felt like I lost a child, rather than a pregnancy. Naming her was cathartic. It gave me someone to say goodbye to.

In the week following our procedure, we spent a few days transforming the empty room that was to be Clara’s nursery into a family library. The empty room at the end of our hallway had been salt in a wound. Creating the library gave that room a new identity and a new life. A few days after we decided to name her, I was sitting in the library’s new green armchair, with sun streaming in through the open window, and started to read a new book. On the 10th page I was introduced to the love interest of the main character, named – Clara. I do not believe in coincidences, and even if I did, this was too much to be one. I cried my eyes out. It felt as though she was saying hello. It felt like she was telling me that we made the right choice to name her, that she was okay, that she loves us, and that she understood. It also felt like she was saying goodbye, and telling me that it was okay to do the same.

That day was one of the hardest in my grieving so far, but the days since have felt, ever so slightly, brighter. I am far from okay, still deep in my grief, as well as battling a resurgence of anxiety that had previously been under control, but I have begun to feel the courage to let go. I will never forget her, and I will always honor her as my first daughter, my third child, my beloved Clara. However, my sons need me, and I need to let go just enough to be here for them. I think she understands, and I know that she feels my love. A love that she will hold claim to for all the rest of my days. Until such a time that we meet again, and I have the exquisite pleasure to hold her in my arms for the first time, and then keep her there, forever.