This Can't Be!

Diagnosis: Spina Bifida Myelomeningocele

By a Grieving Mother

My daughter, my first pregnancy at the age of 39, was planned using fertility that had been unsuccessful for three months. The fourth Intrauterine Insemination (IUI) worked. My husband and I are both in the medical profession and spent years as poor students. After school we spent some time traveling and made up for the fun we had missed while in school. We were both well aware of all of the complications that can accompany pregnancy; we were scared, yet finally felt ready this past year to become parents. All of our friends and our parents said “You’re never ready to have kids." But we were. We were 110% ready to be parents. We really wanted a girl, too. His family is overrun with boys and my family really values girls. With each week we breathed a sigh of relief that we had not miscarried. You can imagine our complete ecstasy at 11 weeks when our Chorionic Villi Sampling (CVS) result was "Chromosomally Normal Girl." I cried tears of joy in the middle of the grocery store when I got the call.

During my pregnancy I journaled to my embryo and fetus as if it were already a person. The journaling  also helped to relieve some of my anxiety and fears about miscarriage. I had hoped to pass the journal to the child after high school graduation or some other milestone. I began to refer to myself as “we” after the CVS results. I called the baby by her name. I ate like I was training for an Olympic event. I especially enjoyed breakfast with her. I was well aware of Neural Tube Defects, so from the time of conception I ate folic acid containing food at every meal, I consumed no caffeine, no alcohol, no artificial sweeteners and no medications. I took extra B vitamins and three times the recommended amount of folic acid. I never missed one day of vitamins and had been on them for a year prior to conception. When I went to the gym, I never allowed my heart rate to get above 110 bpm. I stayed out of the sun/heat. I got plenty of rest. My primary symptom was fatigue. I had some food cravings and some minor food aversions, but no nausea or vomiting.

Knowing she was genetically normal encouraged us to tell people. We started by telling a few friends. At week 13 we told my mom and at week 14 we told his parents. Everyone was surprised because no one even knew we were trying. My mom was so excited to finally be a grandma. His mom was grateful there would finally be a granddaughter. I finally started to relax about the pregnancy. We made it through the 1st trimester, so miscarriage was much less likely to occur. My next appointment with my Perinatologist was scheduled for 15 weeks and I had invited my mother to come since my husband was working.

On Saturday night, three nights before my 15-week appointment, I had a terrible nightmare that I was losing the baby. I woke up Sunday morning crying and actually had to call my mom. I was so upset. It took me until about noon to calm down. The dream was so vivid. In the dream as the baby was being ultrasounded she was looking at me forlornly while miscarrying. At my 15-week appointment, my doctor chatted with my mom, measured my belly and did a heart doppler on the fetus. I had gained 8 pounds. He asked if I had any concerns. I told him about the nightmare and he said that although an ultrasound was not scheduled for this visit, they could do one to reassure me.

My mom and I went into the ultrasound room and the technician began the scan. I had told mom how active she had been on ultrasound at the 11- week appointment, how she had kicked her legs while the CVS was being done. Today my little girl was trying to put her hand in her mouth and the technician said “her legs are crossed.” Mom and I joked about what a little lady she was. I then asked the technician if we could see the baby in 4D and when she switched to 4D we saw it…..the hole in her back. Her legs were not going to uncross, they could no longer move. I can’t even describe how horrible I felt. I was in a panic. I knew what was wrong. How can this happen? I did everything I could to prevent this. What did I miss? The technician went to get the doctor. I said “No.No.No.” My head swam. My mom looked at me and said, “You are her mother and you will take care of her.” I looked at my mom and said, “ You have no idea what you’re talking about. This is very bad.”

The doctor came and confirmed the technician's findings.  He also found that my daughter had a positive “banana” sign, meaning her brain was affected. I desperately began dialing my husband's cell phone. The doctor stated that I would need more frequent ultrasounds, that God thought I would be a good mommy for this baby, that she would most likely not have bowel and bladder function, that she would probably need a shunt in her head at birth, that he had a very good outcome previously with a little boy who had Spina Bifida.

Between my mom and the doctor, I felt pressure, confusion. I tried to think logically. Life is hard enough. Why bring a severely sick child into the world? Why did God let this happen? My heart was breaking, so my head took over. Deep down, I knew what I would have to do. I asked the doctor “If we decide to terminate the pregnancy, can you do that for us?” He said "Yes." Then I asked, “How long do we have to decide?” He said “By the end of this week, preferably.” I asked whether he would talk to my husband.

Damn why wouldn’t my husband answer his phone? He must be with a patient himself. My mom was crying. I just kept pushing redial. The doctor gave me his cell phone number. My mom and I left the office. My husband called. I told him the bad news and gave him the doctor's number. He said he would call the doctor after work. My mom said that if I needed help with the baby, she would help. I drove my mom home and then went home and waited for my husband. He would know what to do. Maybe the malformation wasn’t that bad. Was I overreacting? I felt like I could crawl out of my skin. I couldn’t catch my breath.

I am grateful that we are medical people. We were able to sift through misleading information on the internet that clouds the differences between Spina Bifida Occulta, Meningocele, and Myelomeningocele. My daughter had Myelomeningocele, the most severe of the disorders. An open hole in her spine that was allowing cerebrospinal fluid to leak out. It was clear that my daughter was already a paraplegic, but maybe her brain would be okay. After talking with the Perinatologist,  my husband scheduled us for a consult with a neurosurgeon the following day. I could not eat. I did not sleep. I feared that my baby would choose now to make her presence known and that I would finally feel her move.

I got out of bed early the next morning and cleaned the house from top to bottom. Anything not requiring thought. We were the last appointment at the neurosurgeon’s office after 5p.m. He explained that there was a chance after birth that my daughter might not breathe on her own, that she may not be able to swallow, that she would never have normal intelligence. He said that she would need a shunt in her brain and that shunts can get infected. She would need to be cathetered to urinate. She would have no control over her bowels. She would develop pressure sores. She would very likely develop a Latex allergy due to surgeries. He said that as she grew, there is a chance that her spinal cord would not grow with her and she could develop a condition known as tethered cord. She would likely have a lot of pain. He said people with Myelomeningocele can die from spontaneous respiratory failure at any time. The neurosurgeon said that his profession had gotten very good at keeping babies with Spina Bifida alive. We thanked him for his honesty. We went home.

I was so tired, but so anxious. The neurosurgeon had confirmed what we both feared. My husband and I agreed that if our cat was as sick as our baby was going to be, we would not let it suffer. We knew that if our little girl made it to term, once born, her health would be out of our hands. The doctors would kick into "save the baby mode." She would be kept alive regardless of life quality. We had talked about these atrocities so often. We had both seen this kind of suffering so many times. Who knew we would have this talk about our own child? We agreed to have the procedure to terminate the pregnancy.

I called my mother to explain how sick our little girl was and to tell her what we decided. I hated that so many people knew I was pregnant. I hated that my mom knew I was making this decision. I wanted to protect her from what I had to do. My mom said that I had to make this choice out of love for my daughter and that it is better that I suffer, so that my daughter wouldn’t have to. That night, as I tried to choke down some dinner, the show “Say Yes to the Dress” was on TV and I had never seen it before. Watching these women choose their wedding gown, I suddenly realized that the happiest time in my life was meeting my husband, falling in love, and getting married and that my daughter would never have that no matter what I did. The tears poured from deep inside me. Another night of no sleep.

The next morning, I called my perinatologist on his cell phone to tell him of our decision to interrupt the pregnancy. He scheduled our Dilation and Evacuation for the end of the day. I remember that day worrying that if I were to be in a car accident and ended up in a coma, some health professionals and right-to-lifers would keep my body alive, so my handicapped child could live. The thought horrified me. My mom accompanied my husband and I that evening. The hospital staff was so wonderful to me, they did not judge me, they tried to soothe me, but my tears would not stop. I was judging myself. In my head I knew I was making the right decision for my little girl, but years of Catholic schooling refused to be outdone by my logic, my ethics classes, my years of experience working with physically and mentally handicapped people.  My poor mother was in the same boat as me. She was in on the conspiracy with my husband and me. When I went under anesthesia, I wished I wouldn’t wake up. My husband was so lucky to be ruled solely by his medical and logical brain. He was very clear that we had only one choice to make. He said our daughter’s defect was a chemical reaction that fizzled. I know all of these things. If my patient, my friend, or my family member were making this choice, I would support their decision without question. But this was happening to me and she shared my body.

After the procedure, the doctor told me that he has learned to always trust a mother’s instinct. He said I made the right decision. My first decision as a mom was to end my little girl’s potential suffering. With the help of a sleeping pill and a pain pill, I slept that night. I woke the next morning to the first breakfast where I wasn’t eating for two. My mom spent this tearful first day with me. I sobbed for days. I bled for 16 days. I lactated for 14 days. I ached from the procedure. I had to limit activity for six weeks. My insurance rejected the claim for my procedure due to a coding issue, so I had to rehash the clinical aspects of my little girl’s demise numerous times over the phone. Most recently, I went for my follow-up visit at the Perinatologist’s office and sat in a waiting room full of pregnant teens. If there is a hell, it could not be as bad as it was sitting in that office.

In an effort to feel less alone, I read and cherished the book A Mothers Dilemma, by Wendy Lyons. I felt comfort and normalcy upon reading that many women, after realizing the fetal prognosis, shared the same urgency to end the pregnancy as I did or as one woman put it “to turn off life support." It is amazing how making a decision such as this drastically decreases the number of friends and family available to us who can tolerate the truth of what has happened to us. I feel guilty accepting condolences from people who think I miscarried. I have only told two of my friends what really happened. My mom says, "tell people only what they can handle." She also says, "as her mother, you did take of her."

I am trying very hard to make sense of what happened to me. I don’t understand how healthy children are born to drug addicts and abusive parents. I envy people who have had easy pregnancies, who are ignorant to a heartbreaking choice. At times I feel like there must be a higher power involved that caused me to have the nightmare that led to that ultrasound that led me to ask for 4D imaging so that I could prevent either a life of suffering for my child or the trauma of miscarrying her. At other times, I wonder how any higher power can exist that allows such defects and suffering. My little girl would not have been abused. We wanted her so much. Is one healthy child too much to ask for? I mourn the daughter that I imagined I would have as well as the sick daughter I let go. In my head, I know I made the right decision. My heart feels shattered and I doubt it will ever be whole again. The piece belonging to my daughter will always be missing.


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