Nova, our shining star

Posted on Posted in Congenital Heart Defects, D&E, Stories

By A.N.

Nova - our shining star
Nova was our baby’s unofficial name, our shining star. You have big dreams for your baby, before he or she ever graces this earth with their presence.

Pregnancy is supposed to be a joyous experience. With a history of two prior miscarriages, we waited until 13 weeks to begin to share the news with people beyond our immediate family. We never did an official announcement but word of mouth travels fast. After 13 weeks, anyone who was in our close circle of friends and family knew we were expecting a little girl. Our family was excited for the addition; my daughter was thrilled that she would have a sister.

Nova was our baby’s unofficial name, our shining star. You have big dreams for your baby, before he or she ever graces this earth with their presence. We figured she would resemble my husband, and be our little monkey, but she would surely have my attitude and be a stubborn little diva.

The first trimester flew by, and the only hiccup we experienced was at our NT (nuchal translucency) screening test at 13 weeks. The measurement was larger than normal. We were right on the cusp at 3.0. Our doctor had told us that this may be an indicator of Down syndrome or a congenital heart defect, but told us not to worry too much because sometimes it is nothing. We’d already had the chromosomal screening, which came back negative, so we deduced that at the very worst, it would be a congenital heart defect possibly calling for corrective surgery down the line, but that she’d be able to live a long and healthy life.

Several weeks went by, and I returned to my doctor for a follow up scan at 16 weeks. Nova’s enlarged nuchal fold had corrected itself, but my doctor was hyper focused on the heart during the scan, stating she had an echogenic intracardiac focus, and “something was not right with her atrium.” She was also measuring a week to two weeks behind. Because it was so early, he could not definitively see what was wrong, but told us that congenital heart defects may resolve on their own and don’t require surgery. He scheduled a follow up ultrasound at 20 weeks with a high risk OB/GYN and a fetal echo at 24 weeks with a pediatric cardiologist.

The next four weeks were painfully slow, and nerve wracking. When the 20-week scan with the high risk OB finally came around, I  felt optimistic and dismissive of the warning signs. I had asked my husband to forgo this visit, since we already knew the sex, and asked that he come to the fetal echo instead, deeming it more important. On a whim, my mom came with me to see her granddaughter. During the scan, the tech went through the motions, stating “this is normal” to various areas, but she gradually grew quiet as she scanned the heart. After about 40 minutes, she said that she was having a difficult time imaging Nova’s heart and that she was going to get another tech to scan me. Another tech came in, had me reposition myself to the left side, and was as quiet as the first tech. I knew this was not a good sign. Finally, she had me roll to my back, and stated something was wrong with her heart. She believed she had a double outlet right ventricle (DORV) and quickly got the doctor.

The doctor came in and went over the diagnosis. We talked for some time about the prognosis. It was not promising. He scheduled me for a fetal echo the next day to confirm his findings. My mom and I then spoke with a genetic counselor who took our family history and I filled in my husband’s family history the best I could to determine if there was any indication of where the heart issue was coming from. Our family history did not lend any clues.

The following day, my husband and I went to the pediatric cardiologist. The cardiologist performed the echocardiogram, and while very talkative, it was more bad news. What he was seeing was not double output right ventricle: Nova had a common atrium, and transposition of the great vessels. He went over these results with us at great length and we were told that Nova would require at least three open heart surgeries, one immediately after being born, and possibly need a heart transplant. He cautioned that he could only perform these surgeries if she was otherwise a healthy baby with no other issues, and believed that Nova had a very poor prognosis.

We left with this information, and were asked to follow up with him in a few weeks if we were going to continue with the pregnancy. My world began to shatter all around me. I contacted the high risk OB/GYN and got an appointment later that day for an amniocentesis. The amniocentesis was done without issue and we were told that over the course of the next month, we would receive updated results as they came in. The high risk doctor talked with us candidly about Arizona laws and informed us that we had a week and a half to decide what we were going to do. He didn’t speak one way or the other on the subject, only voiced his concern about what this pregnancy might do to my health if we continued. He again went over Nova’s very poor prognosis, and stopped short of saying our situation was hopeless.

My husband and I went home, feeling defeated. We began to understand what we had to do for our daughter, to protect her. We talked at length at our options, and determined that what was best for our daughter was to terminate the pregnancy. We could not bear to see our daughter’s life (if she even made it to birth) full of uncertainty, full of surgeries and full of pain. We were determined to protect her from becoming a medical experiment, and believed the most compassionate and loving thing we could do for her was to terminate the pregnancy. It was the hardest decision of our lives. We started to come to terms with the fact that we would never meet Nova, never see her, never hold her and never be able to kiss her and tell her that we loved her.

I contacted my regular doctor’s office to tell him the prognosis. My physician was out of town for two weeks, and I explained over the phone to the receptionist my situation, and asked that someone contact me immediately. She put me on hold for a few minutes, and returned to the line with the number for an abortion clinic and told me they could help me and hung up.

I became enraged. Why was she giving me this information? I had wanted my daughter. I didn’t want to “abort” her; I wanted to terminate my pregnancy to keep her safe from her very poor prognosis. Didn’t the receptionist listen? I called back, and again asked her to have the on-call physician contact the high risk OB and get the story straight before calling me back. I hung up, furious and confused and waited for the call.

Later that evening the on-call physician who had talked to the high risk OB contacted me. I began to talk about delivering Nova at the hospital, and she immediately stopped me. She said this was not ethical for the hospital or their office to approve or perform. The receptionist on the phone had been correct to direct me to the abortion clinic downtown. I was so confused and scared in that moment. I sank in my chair as she went over the law, the hospital’s board of ethics, and her personal opinion on the matter.

I hung up. I could not believe this was true. Did every family whose child was faced with such a poor prognosis have to go through this? Defeated, I called the abortion clinic and scheduled an appointment for the next day.

My appointment that Friday, was only an initial consultation. I signed in and sat down with my husband, sick to my stomach. The waiting room was full of women from every walk of life. I despised being there, from the moment of arrival. I was taken back to have an ultrasound and to have blood work drawn. That’s when the horror started. Arizona state law requires abortion clinics to inform you of the risks and alternatives to the procedure, the probable gestational age and physiological characteristics of the preborn child, and services available from public and private agencies to assist during pregnancy and after birth.

They are also required to tell you in painfully graphic detail exactly what happens during an abortion, or the medical term for the procedure, dilation and evacuation (D&E). My husband was asked to leave the room before they went over this information, because Arizona law apparently assumes that all men are scum in every situation and mine may be trying to coerce me into this. I had to sign several pages of paperwork to proceed. I was asked to return Tuesday the following week to begin the dilation process and told my procedure would take three days to complete.

I returned Tuesday with my husband and mom by my side. I anxiously waited in the packed waiting room to begin the process that would take my daughter’s life. When I was finally called back to an exam room my anxiety really took hold.

There was a speaker playing upbeat, cheery music, and I heard laughter down the hall. How could a place of such hell and sorrow be filled with such happy people? Why was there music? I did not need to have this procedure associated with a need a musical number. I contemplated leaving, just running away, and risk my health, risk my daughter’s comfort, just so I wouldn’t have to go through with this. For Nova, I stayed. I would not allow her time on this plane to begin and (most definitely) end with tubes, catheters, and mutilating surgeries. The doctor and several nurses came in, and went over the procedure. Today, they would insert as many laminaria as possible into my cervix to begin the dilation process.

I laid back and commented on how I felt like a dog at the vet’s office, that this process seemed inhumane somehow. The laminaria insertion didn’t take very long, but it was one of the more painful things I had ever experienced. I was sent on my way with an antibiotic and Vicodin in little yellow envelopes.

Returning Wednesday morning, I was taken back rather quickly, and the doctor inserted several more laminaria. I was instructed to go home and return again Thursday morning to proceed with the D&E.

After the appointment Wednesday we headed to a nearby funeral home to make arrangements for Nova’s remains. We bought a silver star urn, which was more than suitable for our little girl. We provided the information on where they could pick up her remains, and they walked us through pages of paperwork. Looking back on this, it still seems surreal. I never imagined I would be making funeral arrangements for our child, but making these arrangements for a child I’d only felt a handful of times, and could only picture in my dreams, was still difficult.

Thursday morning the waiting room was empty and I was taken back right away. I hugged my mom and husband and solemnly followed the nurse to the exam room. I laid down on the exam table, while the nurse started the IV. The doctor came in, briefly went over the procedure, and gave me two shots into my IV. I felt some relief, hoping that the drugs would work as promised and I wouldn’t remember much. My legs were placed in stirrups and the doctor positioned himself on a stool between them. Two nurses remained by my side, holding my hands. I closed my eyes hoping to escape from this, but I couldn’t. I felt a gush of fluids release from my body, and I began to panic and cry uncontrollably. I then felt the doctor tugging and pulling Nova violently from my womb. Refusing to open my eyes, I closed them tighter, but the tears streamed down my face. I was sobbing uncontrollably, as the nurses grasped my hands tighter and the doctor ordered me to “stop crying and breathe. I couldn’t. I couldn’t believe what I was experiencing, what I was feeling. My heart flooded with sorrow, and in that moment I wished for death. I wished that some higher being would grant me the same compassion I granted my daughter, and hoped that my heart would stop beating and I would slip away. I continued to cry, for myself, for Nova, for what we had just gone through together. I hoped, but did not ask, if she was gone before experiencing any pain. I couldn’t bear for her to feel a second of pain, and hoped that I had taken it all so she would have been able to slip away peacefully, only knowing the love I felt for her.

When the procedure was finally over, I opened my eyes and was taken to the recovery area, which was a row of green leather recliners. I laid back, and closed my eyes, hoping the recovery period would go by quickly. I just wanted my husband, needed him in this moment, more than I’ve ever needed someone in my entire life, yet he could not be with me. I could only lie there and suppress my anger and grief, and again convince myself that I did right by my daughter. I was overcome with loneliness and an eternal emptiness, not just physically, but an emotional emptiness as well.

The nurses continued to take my vitals for the length of my recovery time, and I was finally allowed to dress. Walking past the other women in the room, in see-through white underwear, I didn’t even care. My humility was taken from me this day, and I was capable of anything at this point. I dressed and met my mom and husband in the hallway. I told them I was traumatized, and did not want to talk about it; I only wanted to go home.

This is the dark side of pregnancy that most people don’t know about unless they’ve lived through it. I would bet that most women, who have shared my hell, swallow their rage and feelings of unjust rather than share their horror stories with others in hopes to make a change. If you’ve ever walked in my shoes, you would know that you try to find the silver lining anywhere you can, because it is far and few between.

I am lucky to have experienced such an amazing outpouring of support and love. We received cards, flowers and even cooked meals; things you would expect and normally do for others when someone loses a family member. I am grateful to those who took the time to do these things and they will forever have a special place in my heart. I also experienced some prejudice and cruelty. I have had “friends” distance themselves from me, and I have had people share their religious beliefs, or their opposition of my decision. I know in my heart, that I did right by Nova, and that she is in peace, only knowing love and compassion from her parents.

I hope that a change can be made, to create a safe haven for the grief stricken women to compassionately end their very much wanted pregnancies and receive after care grief support, because the pain is real, the loss is real. I hope that state and federal government amend their laws because no woman deserves to suffer. I hope that by sharing my story, others women can be informed of the current laws and feel empowered to share their stories as well and come together for a change. To receive such a poor prognosis for a baby you love so much, is one of the worst thing anyone could ever live through. But to receive subhuman treatment just for trying to avoid the undue pain and suffering for your child, only adds insult to injury.

What matters is that through this hell, I gave my daughter the gift of peace and love, which is all we ever wanted for her.

We love you Nova, rest in peace sweet angel.

 

 

Image credit: Cover detail from Starbaby by Frank Asch (out of print)