Nothing Good Comes Easy

Posted on Posted in D&E, Trisomy 18 (Edward's syndrome)

By Timothy’s Mother

Nothing Good Comes Easy
In order to work through her anger and resentment, the author crocheted a baby blanket for each of the babies of her many pregnant co-workers.

My husband and I got married in March 2002 and were very excited, and eager to begin our family. To my surprise I found out I was pregnant only a few months later.

All my life I had dreamed of that moment. Having a baby was my whole reason for everything I had ever done up to that point in time. All my baby dolls from my childhood were still in excellent condition, evidence of the superb care I had shown them. I had worked with children as a mother’s helper, babysitter, camp counselor, daycare teacher, and classroom teacher. It was finally my chance to care for my own, real, living child.

My husband and I were so happy and our families were just as excited. This was going to not only be our first child but also the first grandchild on both sides of the family. We all got busy choosing names, buying toys and planning the nursery. I was so excited I wanted to tell the world! Everyone kept telling that it was bad luck to say anything before the first three months. I didn’t want to mess with superstition so I patiently waited. At the three month mark it was time to return to work after the summer break. I triumphantly declared my pregnancy and basked in the glow of the moment I had dreamed about. Everyone was participating in my happiness and excitement. At the time there were seven other teachers in my school who were pregnant with me. We made the joke that there was something in the water.

Everything went well for a few weeks after that. I had felt a little tired but I wasn’t achy or nauseated, what a dream. One Saturday, I woke and discovered I was bleeding. I didn’t feel any cramping so I put on a pad and calmly told my husband. He was concerned but because I was clam, he was calm. Soon after I had a feeling the pad was saturated and went to check. I was right and I knew then it was time to call the doctor. She told me that not cramping was a good sign but I should head over to the hospital and get checked out. My husband was ready to call work and tell them he wasn’t coming, but I told him I was OK and would call him from the hospital when I knew more. He tried to insist on driving me to the hospital but I wasn’t having it. I’m strong, I’m tough, I can handle it, don’t worry. Poor guy.

On the way to the hospital I hummed a Nora Jones song to the baby. When I arrived they took my vitals. Because I was not yet at 20 weeks, they kept me in the ER. I was disappointed because I wanted to be in the maternity ward. They did a sonogram and used the Doppler. The heartbeat was loud and clear. The technician checked the blurry ultrasound and said he couldn’t see anything wrong. As I waited to be discharged, I heard the fire alarm bells go off. Oh great, now what? The bells stopped and a moment later my husband stood in the doorway looking a little frazzled. “Was that you?” I asked, referring to the fire alarm. “Yup, I got lost”. His sincerity and innocence made me laugh and eased the tension of the situation. My doctor put me on two weeks bed rest and sent me home.

Bed rest is for the birds, especially if you have an active mind, are not used to sitting still, and are worried. My husband brought me a stack of movies to keep me distracted. I had my grandmother’s prayer cards which I read many times thought the ordeal, a needlepoint project, and things to read. The time went by, slowly but surely. My friends and family kept me in their thoughts and prayers with uplifting phone calls. My best friend was due three months before me. We would daydream about what it would be like to raise our children together. They would be close friends too, of course. The Drew Barrymore movie “Riding in Cars With Boys” had come out and those two girls were so us! She cheered me on and pepped me up. My sweet sister-in-law came over with food. My parents were living in Florida and kept asking me if I wanted them to come up. Nope, superwoman could handle anything, this would pass, no need to worry.

At the end of the two weeks, the spotting had stopped and I was free to return to work. After a full day of teaching, the blood returned and so did I—to the ER. Again, the baby’s heart was beating and he or she was moving around. At this point I was put on strict bed rest indefinitely. My parents told me they were coming up to keep me company. I was glad because now I was beginning to worry a little. I was holding on to the stories of women that spotted their entire pregnancy. Yes, that was it, that was what was happening to me, what else could it be?

I was supposed to have my AFP test by now but my doctor was holding off because of the spotting. She said it could cause false positives. The window for performing the test was rapidly closing and she had to administer the test regardless of the spotting. At this point I was closing in on 20 weeks.

I was sitting home alone. My husband was at work and my parent were out running errands. My doctor called to say she’d received the results of the AFP. It turned out that there was something indicating that the baby might have something called Trisomy 18. What? She went on to explain it a little better, but I didn’t comprehending what she was saying until I heard the words that to this day still ring in my ears: Not conducive to life.

I felt paralyzed, numb and deaf. She kept talking though, telling me to come in the next day for genetic counseling and amniocentesis. Huh? What? Is this actually happening? I called my husband and robotically repeated what the doctor had said. He said he’d come right home. I fell to the floor clutching my belly, crying and moaning, “No, no, no, not my baby…” My parents came home to this and were absolutely heartbroken and helpless.

The next day my husband and I went in and numbly did what the doctors told us to do. Filling out the medical forms I realized my health insurance hadn’t even changed over to my married name. My God, that’s right, we’re still newlyweds. The next few months would test our marriage like nothing else. In the end we would know the true strength of the vows we’d taken.

My doctor was there in the level II sonogram room along with a gentle staff that seemed to know the circumstances of our visit. My baby was very active on the big screen. I thought I saw something and asked of it was a boy. She said it was and my husband exclaimed, “Timothy!”

My son. He looked just fine. How could he possibly have all the things wrong that I was being told? As she was inserting the needle for the amnio, he was moving so much I could feel him kicking. After a while of quiet sonogram examination, my doctor calmly and quietly began to explaining “markers” she was seeing. Multiple cysts were developing in his brain and his heart. His hands were malformed and his feet were clubbed. His abdomen was developing outside of his body and he had a tremendous amount of liquid in his nuchal fold. As she was listing all of the malformations, I watched him on the screen and thought there is my child, my son, and I can’t have him alive and well.

My doctor turned to my husband and I. She wiped my tears, held my husband’s hand and quietly explained that we had three options.

The first option was to do nothing and wait to miscarry. What? How was I supposed to manage that? I’d end up in a mental institution, I could feel him moving. How could I eat, sleep or function waiting for for a miscarriage to happen?

The second was to induce labor. She said I would be in Labor and Delivery with other healthy moms delivering healthy babies and that I would hear the cries from the other babies but I would probably not hear my own. I would then be sent to recover with the general population of the hospital. The labor could prove risky to me since I was so far along in the pregnancy. I couldn’t bear the thought of it.

The third option was for a D & E. I would not get to see or hold my baby afterward but it would be done in the outpatient building far away from the maternity ward and nursery. There would be no risk to me. The procedure was very safe.

I was concerned that the baby was still alive. I was born a Catholic and have been very active in the church. This was a life, even if he was dying. I could not allow him to suffer in any way. She said she could do a type of amniotic injection to stop his heartbeat (KCL), but with the D & E I would be under anesthesia and so would the baby. In effect, because of the anesthesia the baby would pass on in his sleep.

We opted for the D & E. We were reminded that with this procedure we would not get to hold him after he was delivered. We understood. They scheduled the date for the procedure and I went home.

Every time I felt a flutter in my belly I prayed it would be me to die instead of him. Why was I put in a position to make a decision that is usually left to God? I prayed I would miscarry before it was time for me to go to the doctor’s office. The night before the procedure, we went to the doctor’s office and she inserted laminaria nto my cervix to dilate me for the procedure the next day. I went home to a painful night, both physically and mentally.

The next day I was cramping and realized I was in labor. I made a frantic call to my doctor and she told me if my water broke before it was time for me to come in for the D & E, I was to go straight to Labor and Delivery. I couldn’t bear the thought of delivering the baby under those conditions and pleaded with her to take me earlier. She mercifully arranged it and we met her at the ambulatory surgery building. The staff prepared me. I wore a blue hospital gown and sat in blue chair waiting for the doctor to come for me. My husband tried to cheer me up by saying I was camouflaged with the chair. I felt bad for him. He was losing his son and watching his wife in pain and about to go in for an operation.

The contractions were unbearable at this point and since I had never taken a Lamaze class, I had no idea how to handle it. Finally the nurse came to get me. I kissed my husband goodbye and walked into the operating room. What a surreal experience. The staff was so kind and non-judgmental. It was like they knew how much I didn’t want to have to have the procedure. When I woke up, the pain was gone, but so was my baby.

I went home to recover and was up and around by the next day. I felt so empty. I had no real way of saying goodbye. At the time I didn’t know about Trisomy 18 websites and support groups. I didn’t know that although I had a D & E, I could have gotten his footprints. There was so much I didn’t know. All my decisions were so rushed, but I have to believe that they were the best decisions for myself, my husband and the baby. I felt like I had to do something to commemorate him. My mother and I went out and bought a statue of a little baby angel sleeping. It was very sweet. When I got home I got the few sonogram pictures I had of Timothy and put them in an airtight container. I wrote a note to him and put a picture of my husband and I with it in an envelope. I asked my parents and my husband’s parents to write him a note also. I put it all in the container with the pictures and buried it in the backyard. I placed the angel statue on top of it.

I was so eager to put the nightmare behind me that I returned to work the following week. I couldn’t bear to have to tell everyone so I asked my boss to tell everyone before I returned to work. I dreaded the thought of people whispering about me. Seeing my colleagues brought on tears initially but I let them know that I was OK to talk about it and I was trying to move forward. Easier said than done. I wanted to die. I wanted to be with my son. Seeing the other seven pregnant women at work tore my heart apart. I was green with envy at their innocent and uneventful pregnancies. I wanted to throw up when I saw their sonogram pictures.

In order to work through my anger and resentment, I crocheted a baby blanket for each of those babies. I also began therapy and was put on anti-depressants.

In the meantime, my best friend had a baby girl and asked my husband and I  to be her Godparents. I think it was a small blessing for us that she was born a girl instead of a boy. To this day I have a difficult time around baby boys. The babt was beautiful and my friend was so generous with her firstborn. She let my husband and I come over as often as we wanted to hold and love her. It was around that time that our doctor told us we could start trying again for another baby.

My husband and I had been living as extremely polite roommates. We barely spoke and walked around like zombies. I would wonder if he was hurting as much as I was. It frustrated me that he could be so calm and nonchalant about everything. One morning in March, the month Timothy was due, I woke up to find that there were no towels in the closet for my shower. I questioned my husband about it and we ended up in a huge argument. We both knew it really had nothing to do with the stupid towels. He stormed off to work. I called in sick and lay crying on the nursery floor.

When he finally returned  from work, we laid on the bed in each others arms. We were two broken souls. I asked him how he seemed to manage going about his life so easily. He told me it wasn’t easy and he was miserable but he just took things one minute at a time at first, then one hour, one day and one week at a time. It was a time for survival. It was a time to think about relationship and nothing else. I knew we had to work through this together or our short marriage would be over.

A few weeks later we baptized our goddaughter, celebrated our one year anniversary, and found out we were pregnant again. The following November, our first daughter, Julia, was born. Two years later in December, we had our second daughter, Sophia. At the time of this writing my husband and I are celebrating our five year wedding anniversary.

I wish I could say the story ends there but the story will continue for as long as I am alive. Five years after my son’s death, my love for him is as fresh as it ever was and the pain of losing him remains. This pain has changed over the years. I have tortured myself with redundant questions and what ifs. I know that ending the pregnancy was the best choice for the welfare of my child.

My wish now, as the mother of two living children, is that I had induced labor and delivery instead of the D & E, but that is my thought now, after delivering two healthy children. I still believe I made the best decision for the time. I worry about things that are hard to discuss with anyone: I never had him baptized, was his soul blessed? Does he feel like I gave up on him? Who would he have looked like? Does he know how much I love him? Torturing myself with decisions of the past is fruitless and destructive, but they still haunt me from time to time. My consolation is my faith. I believe that one day my son and I will be reunited. I have tried to attend mass but the scornful words of a priest comparing a woman who had an abortion to a murderer proved to much for me to bear. Religion continues to be a challenge for me, but faith isn’t.

I feel like I was put through this ordeal for a reason. I eventually became an active part of a support group and have been put in situations to help other women who have lost babies. They tell me I have been a big comfort and support to them. If I had to go through what I went through in order to help them, then I understand and I accept. I have been blessed with two healthy, funny, spirited, beautiful little girls. My beloved Grandmother used to tell me that “nothing good comes easy” and my life experiences have proved her correct. I cannot say what is in store for my future. I cannot ensure that I will be free of heartache. But I have found strength within myself and my marriage that reassures my resilience to hardships I may encounter in my future.

In the future I hope to become an active member and volunteer for the Trisomy 18 Foundation but for now, I am taking it one year at a time, doing my best and keeping the faith. God bless all mothers, fathers and babies everywhere.

 
photo credit: Action Craft – Anne and Michelle via photopin (license)