Will You Let Her Go?

Nov 2, 2016 | D&E, Stories, Trisomy 18 (Edward's syndrome)

On Tuesday, December 22, the doctor called to confirm that Angela had Trisomy 18 in every cell in her body, or full Trisomy 18.

By Vanessa Spiritoso

When I was pregnant with baby number three, I wasn’t excited but I wasn’t unhappy. My mind was preoccupied with running after my two boys who are under the age of five. I really didn’t have time to focus on baby number three. Some days I felt pregnant, but most days I did not. I remember telling my family that I knew I was pregnant but it didn’t feel like it. I even remember talking to my baby asking, “Are you in there?” because I didn’t feel like I felt when I was pregnant with the boys. I didn’t have that aggressive progression of growth that reminded me every day when I woke up in the morning, in the afternoon, and in the evening that yes, I was definitely pregnant.

My husband and I knew this for sure, that we wanted this baby to be a girl. I longed and wondered what my daughter would be like, ‘Would she be light skinned or dark skinned? Would she have brown eyes or green eyes like my husband? Would she have my dimples? Would she be funny? Would she be athletic or brainy or would she be both? Would she and I become best friends? I would love to have a daughter of my own.

The pregnancy was very different than my boys where I had morning sickness all day for the first six weeks. I couldn’t smell anything sweet without gasping. I couldn’t eat anything sweet because somehow it would over stimulate my taste buds and I would feel nauseated. When I ate something, I was nauseated. When I didn’t eat anything, I was nauseated. The only thing that would help is when I ate spicy foods (which I don’t usually eat) and drank very cold water. I would eat cheese hoagies and cheese and egg sandwiches and cheesy bread. The biggest thing I noticed is that I felt and looked smaller than I was with the boys. I thought maybe it’s a girl this time. It’s got to be a girl.

The odd thing about this pregnancy was I was reluctant to tell people that I was pregnant. I remember with my boys I told everyone and anyone I was pregnant. When I was in the parks with this pregnancy, however, I wanted to tell the other moms and dads I was expecting my third child, but something held me back. It was like I was having a secret baby that I didn’t want anyone to know about.

Around the fifteenth week of pregnancy, I took a cell-free DNA blood test to see if the baby had any chromosome abnormalities such as Trisomy 21, Trisomy 18, or Trisomy 13 and to find out the sex of the baby. The following week, my husband was bugging me to call the genetic counselor to find out the sex. I left her a message late in the afternoon and didn’t think much of it. The following day, I received the call from the genetic counselor. She told me the screening test came back positive for Trisomy 18 (Edwards Syndrome). I couldn’t believe it.

She suggested I set up an anatomy scan as soon as possible to see if the baby had any signs of the syndrome. Since I was going to my midwife the next day, I decided to do the scan that day as well. I asked her what the sex of the baby was. She asked me was I sure I wanted to know because people usually wait until the anatomy scan to see if the baby is alright first. I told her I’ll ask my husband first and then give her a call back if he wants to know, too.

I called my husband while he was at work and told him what the genetic counselor told me. He looked up the syndrome and I could tell in his voice that he was shocked and hurt. My husband started reading the characteristics of the syndrome to me. The chances of survival of the baby wouldn’t be good if the baby made it to term. I asked him if he wanted to know the sex and he didn’t until after the scan.

I made up my mind that if the baby did have Trisomy 18, I couldn’t go through with the pregnancy. My husband texted me asking what test did I take and I called him to tell him it was the cell-free DNA test. He read that the test could come back with false positive and the baby may or may not have the syndrome. I think he was trying to hold on to hope that maybe this was one of those false positives and we would find out that our baby was fine. I, on the other hand, wasn’t so hopeful. My motherly instincts felt that something wasn’t right. Thinking back to those symptoms I felt earlier in the pregnancy, my body was telling me that something wasn’t right. My husband and I just hoped the ultrasound showed us that we had a normal looking baby.

December 18th, my husband and I went to the anatomy scan. I sat in the waiting room looking at a couple of mothers-to-be with their baby bellies. One of them had a belly big enough that she must have been there for her twenty-week scan. I compared my little pouch of a belly. Although I was 16 weeks and 1 day, after having two kids prior, my belly should have been bigger. Seeing this made me worry more.

The ultrasound technician called us to the room to get a scan of the baby. As I laid there on the table getting ready to see our baby, I’ve imagined if the baby had Trisomy 18 we would see some deformities and I braced myself for the worst. When the technician smoothed the wand over my belly and I saw the image of our little baby, I felt a little relieved. It didn’t look like anything was wrong. Then the technician showed the side view of the baby’s head and pointed out that there was slight nuchal fluid in the back of the baby’s neck. “This is a sign of Trisomy 18,” she said.

She noticed two cysts on the brain, which isn’t normal. I started to tear up and had my right arm over my head. The technician told me to put my arm across my crest, with coldness in her voice. This bad bedside matter and showed she was only concerned about doing her job. I noticed my husband wiping tear drops from his eyes.

She scanned the baby’s legs, back, arms, kidneys, and bladder which looked normal. Then she scanned the baby’s stomach and discovered fluid in the intestines.

“See the bright color in the intestines? That shouldn’t be there; it should be solid.”

“What does that mean,” I asked.

“It means the baby is sick,” she says.

I started wailing. The technician if I wanted to stop and get the doctor in. I said yes. She asked my husband to comfort me while she got the doctor.

The doctor came in confirmed what the technician had seen. Our baby’s condition was consistent Trisomy 18. The genetics counselor came in as well, and said that she hoped that I was in the one percent that the test was wrong for. She hugged and comforted me. I asked the doctor was there any other syndromes that are similar to Trisomy 18. The doctor said yes, but giving the cell-free DNA screening test and the ultrasound, it was most likely Trisomy 18. Both the genetics counselor and the doctor recommend the amniocentesis test to confirm the diagnosis.

“What’s the use of getting the test if the baby has it?” I asked.

The doctor and genetics counselor said it was up to me and asked me if I wanted to continue with the pregnancy or terminate. I wanted to terminate but asked my husband about getting the test. My husband wanted to make sure the baby had Trisomy 18 before terminating the pregnancy. We agreed to do the amniocentesis. The genetics counselor suggested we get the preliminary FISH test results which come back in three to four days, to could help us make the decision on whether to terminate or continue with the pregnancy.

The doctor and the ultrasound technician prepared my belly to do the amniocentesis. The technician did the scan to prepare for the test and the head doctor came in to review everything that the previous doctor and the technician said. She also mentioned that the baby was about a week to week in a half behind in growth, which is common with Trisomy 18.

The doctor asked if I ready for the amniocentesis test and warned me when the needle would pierce my uterus. It stung. I was heartbroken and numb with grief that I didn’t notice much of the pain of the needle drawing the amniotic fluid. After wards, I cried so hard that I felt I was choking on my own air.

The doctors told us Trisomy 18 happens when the sperm or egg has an extra 18th chromosome and once conception happens, the extra chromosome is transferred to the fetus. The doctors reassured us we’d done nothing wrong, and that it would be rare for this to happened again in our next pregnancy.

After I’d calmed down a little, I asked what the baby’s sex was.

“Are you sure you want to know?” he asked.

I asked my husband if he wanted to know. He said it was up to me. I wanted to know because I was curious and didn’t want to guess if the baby was a boy or a girl.

The ultrasound technician looked up the results of the cell-free DNA paperwork on the computer and said, “It’s female.”

I screamed,” No! No! No! Oh My God, No!” and banged my heels on the metal skirt around ultrasound table. I cried like I’ve never cried before.

I told the doctor, “We wanted a girl so bad because we have two boys already.”

I’ve cried for about another five minutes letting my body feel the pain in every muscle, every breath of my being. My soul felt like it was ripped from my body. I wanted to die. I felt like this was some cruel joke. I hated the universe for cursing our family. I was angry with myself because I couldn’t protect her. I thought to myself, “Maybe I’m too old to be having babies. If I’d had my tubes tied and accepted that I wasn’t meant to have a daughter, that my boys were enough, my baby girl wouldn’t be dying inside me right now.”

It was a quiet walk from the office back to where we’d parked our car. Those four blocks seemed like the longest walk in our silence. When we got to the car, my husband called his job and also told his mother about our baby girl’s diagnosis. I called my father and told him in tears about our baby. My father tried to give words of encouragement and told both of us to be strong. It’s amazing how much a tragic situation can affect so many people and yet although they were hurting for our baby girl, it’s not the same type of hurt my husband. For us, the ultimate decision, the conclusion of this chapter, would be saying goodbye to the daughter that we wanted by terminating the pregnancy.

Our families were praying the amniocentesis test would come back negative or with something curable. I even prayed to God for the first time in a long time, hoping he would bless me with his grace and save my daughter. However, I also realized if it was confirmed that my daughter had Trisomy 18, I would not let her suffer and bring her into this world where she would be in pain and going through multiple surgeries, constantly worrying about infections because her immune system would be so weak, her having a hard time breathing and eating, or worrying about her going into cardiac arrest. I could not put her through that. I would not put her through that.

That weekend would be the longest weekend of my life. Those few days waiting for the FISH result to confirm my daughter’s condition seem like an eternity.

I named my daughter Angela Michelle. I always wanted my first daughter to be named Angela because, it may be silly to some, but I love the theme song from Taxi. When I found out the name of the song was Angela, I vowed that I would name my daughter that. The song is soothing, tender, emotional, peaceful, and beautiful. I imagine the personality of my daughter would be the perfect physical embodiment of the song. It pains me that her physical body wouldn’t be able to survive the physical world and my dreams of my daughter will only be in a song and not in my loving arms.

To help pass the time and try to lift our spirits, we put up the Christmas tree, wrapped presents and spend the time decorating the tree with our boys.

I was mindful of Angela’s lack of movement. It felt like she was just laying there in my belly. She’d kick softly on my left side for a minute or two, then I wouldn’t feel anything for the rest of the day. She must not be well.

On Tuesday, December 22, the doctor called to confirm that Angela had Trisomy 18 in every cell in her body, or full Trisomy 18. I wasn’t surprised, but I still hoped for a miracle. I called my husband and told him. My husband wanted to wait to schedule the abortion because he wanted the full report. I told my husband I’d schedule the abortion to allow time to get the full report, but if it took more than fourteen days, I’d get the abortion. I couldn’t let her suffer more than she had to.

Wednesday, December 23, I called the abortion provider at the hospital and planned to say goodbye to my beloved daughter on January 6, 2016. For the next week in a half, Angela’s movements didn’t improve. Her kicks and/or punches felt the same as they did when I first felt her movements at fourteen weeks. The thought of my little girl dying inside me made me feel helpless because the point of being a parent is to protect your children. How could I protect my child from an unseen event? This helpless feeling makes me realize there is something bigger than me, bigger than God that has control of the situation. How can I fight something neither I nor God has control of?

On Tuesday, January 5, 2016, I met with the assistant doctor to discuss the abortion procedure. I asked about the baby feeling pain and was told that the baby didn’t feel at this stage. The doctor did one final scan of Angela to measure how big she was and how many dilators they would need to put in my cervix to open me up and take her out. The doctor asked if I wanted to see the baby again. I did. I looked upon my small baby with her heart still beating, but just lying still. The doctor moved the wand over my belly and Angela just laid there, reluctant to move.

As I looked at my little angel, I wonder if she knew today would be the last day that she was going to be alive. I wonder if she knew she was sick and struggling to live. I wonder if she knew that I was letting her go because it pained me to feel her and seeing her sick. I wonder if she will forgive me and know that I was doing what I thought was best for her.

I laid down and a nurse inserted the dilators into my cervix. I felt the sting of every one of those tiny, hard sticks piercing my cervix, opening me up and preparing for my baby’s departure. Afterward, a nurse gave me information about the surgery, numbers to call if I experience a fever or if my water broke before the surgery, and to make final arrangements for my baby.

On Wednesday, January 6, 2016, around 3:00 PM, I checked in for the surgery. After I’d changed into a hospital gown, they placed an IV port in my hand. The nurse took my vitals and the assistant doctor, who was also performing the surgery, gave me two dissolvable pills in each cheek to soften my cervix. As I waited for the pills to dissolve, I tried not to think about the surgery and watch Comedy Central on the TV with my husband.

We waited about 45 minutes. When the doctors were ready to wheel me back for the surgery, I kissed my husband and said I’d see him when I woke up. I remember the bright lights on the ceiling as they rolled me down the hallway, and telling the anesthetist assistant that the operating room didn’t look as scary as I thought it would. I sat on the operating, then laid down. The assistant anesthetist gave me something to relax and I felt the effects right away. The last thing I remember was the assistant surgeon rubbing my hand to comfort me. I said, “I’m trying not to cry,” as I teared up.

I woke up as the operating team wheeled me into the recovery room. Once the effects of the anesthesia wore off, I got dressed and was ready to leave.

When I got home, I felt relieved that Angela wasn’t suffering anymore, but I also felt the emptiness in my womb and my heart was breaking. I cried that night, lying in the bed feeling my belly and knowing she wasn’t there with me. A void developed in my heart. To this day, I still feel the void in my heart for my beloved daughter.

Some days, I see this situation as just a bad luck experience that happened and realize, as I read other stories of Trisomy 18 pregnancies, that it didn’t just happen to me. Other days, I felt like it was a catch 22. I felt the universe was telling me, “I will grant you the daughter you asked for but the catch is she will be very ill and maybe not be born alive. If she is, she will have severe physical and mental conditions that will make it hard for her to live a normal life. She will need multiple surgeries, a feeding tube, breathing tube, and have heart problems. It will break you and your husband’s heart to see her go through so much pain knowing there’s nothing your can do about it. Do you still want a daughter or will you let her go?”

People ask me if I’m going to try again. It’s difficult to say because there is no right answer for me. Some people tell me, “In time, you’ll get over it and move on.” How could I get over the biggest, the most painful heartbreak that I could endure in my life?

Some days are easier than others and although the pain of her lost lessens by the day, I can still feel the ache in my heart every day. That will never go away.

My daughter wanted to be with our family. She didn’t know that her soul would be in a body that wouldn’t function properly to live a fulfilling life. She would never live to her full potential. Knowing this broke my heart. I wanted to take her pain away not be the person to give her pain. I wanted her life to be easier not harder. It hurts me so much that I had to let her go because I wanted her here, too.


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