Lyndie Jane

Diagnosis: Trisomy 18

By Robin B.

God puts us exactly in the right places at the right time. I do believe this. I believe with all my heart that if God brings us to a circumstance, he will see us through it. My deep faith has brought me through the most trying time of my life.

April 9, 2004: Good Friday. I was delighted to find out that I was expecting my second child. I knew it was a girl. I had longed to have another baby. I already had a beautiful, healthy son; this baby inside my womb would complete me.

Everyone was skeptical of my delight because I was a single parent. “Why on earth would you want another baby? How are you going to take care of it?” These were questions I got frequently. I knew it might be difficult, but I had enough love and enough support from my family to raise another child. My mother had just retired and was delighted to be able to hold and rock this baby any time she wanted to.

We were happier than her father was. This was the second child we had created and again he did not want this baby. He walked away from me for the second time.

I had just become a confirmed catholic and would not consider abortion. I wanted and loved this baby as much as my child that was already born.

I work in a neonatal intensive care unit at a local hospital and I have seen babies born extremely premature become “miracle babies’ and live against all odds. I have also seen babies born with horrifying birth defects suffer for too long, only to die anyway. I have seen the parents look at the doctors with pleading eyes that say “please make my baby okay.” I have seen these parent's world torn apart when the baby isn’t okay.

As I stated above I believe that God puts us where we need to be. I didn’t ever plan on working in the NICU, I went to school and got my degree in of all things mortuary sciences. When my career path in the funeral industry didn’t go as planned, my sister who is a nurse in the NICU, helped me get a job as the unit secretary.

Right after I found out I was pregnant, there was a baby in our NICU that died from complications of Trisomy 18. The parents knew the diagnosis before the baby was born but they wanted their baby to defy the odds: they wanted everything done to save their baby. I swore to myself I would never put my unborn baby through that “if” something should be wrong with her. That'’s easy to say when you expect your baby to be healthy.

I chose to have an amnio because I was 35. I wanted to be sure the baby was fine and that she was a girl. My mother and sister accompanied me to the perinatologist's office. We met with a genetic counselor first. I listened to her explain the different chromosome anomalies with about as much thought as you listen to a flight attendant tell you what to do in case of a crash. You listen and think “that won’t happen to me. Horrible things like that happen to other people, not me.”

We went back to the exam room where we had a sonogram first. We asked the tech if she could tell what sex the baby was; she could not. The doctor came in and looked at the baby. He told me that the baby looked good and then drew out some amniotic fluid from my womb.

I thought it was strange that my baby was not curled up in a ball like most fetuses. She lay there with her legs straight out. I told myself that it was because I was only 16 weeks pregnant and she still had plenty of room to stretch. She moved a little, but not much. She never did. I would tell people that she was my calm child. My son had bounced around my womb from the time he was 15 weeks. She would move very slightly every once in awhile.

I was sent home to rest that day and was told they would call with the results (good or bad) in 10-14 days. I was anxious to get the results. I had sleepless nights. I believe my subconscious was telling me that something wasn’t right with the baby. I lay in bed at night hoping to feel her move. She would move very slightly. There were no kicks or thumps like there had been with my son.

On July 9, I got the call from the genetic counselor we had met with 10 days earlier. The first words out of her mouth were, “I am sorry, I don’t have good news for you.” I screamed. My son and my niece came running into my room to see what was wrong. The counselor continued, “Your baby has a chromosome anomaly called Trisomy 18, do you remember me telling you what that was?” I was sobbing hysterically. I managed to say “yes, my cousin's’ baby had the same thing.” She said, “Then you know how grave this diagnosis is?”

I don’t remember much more of the conversation, except that I wanted to know the sex of the baby. She told me it was a girl. I had known all along that she was a girl. The counselor gave me her personal cell number so I could call her any time I had more questions. She told me my doctor would be calling me shortly. I managed to call my mom and blurted out that the baby had trisomy 18. She and dad rushed over. I called my sister who was at work that day. She came home immediately.

I remember the kids sobbing; my mom calling the counselor back about retesting; my doctor telling me he recommended termination; my sister calling the clinic where a second-trimester abortion could be performed; the terrifying news that I might have to travel out of state if I was too far along; the dozens of phone calls to notify friends and relatives; and the horrific feeling that my world had been turned upside-down.

I remember not sleeping; wanting to be alone but not being able to bear the thought of my family leaving my side; wanting the counselor to take back her words. I wanted back my “old” life: the happy life with a beautiful baby on the way.

I hadn’t felt the baby move in what seemed like forever, so we called my OB’s office and had the doctor on call listen for heart tones. He agreed to meet us at the hospital. The entire drive into town I prayed that he would not find her heart beating. I wanted God to make this horrific decision for me. Her heart was still beating strong when he listened. I cried.

This doctor, whom I did not know, looked at me and said, "“No matter what decision you make they are all shitty!”" I clung to his words. That was exactly how I felt.

My family and I talked about letting her be born and then putting her in hospice care. I didn’t want her to linger and suffer for days. I wanted her death, which was inevitatable, to be quick. I had seen too many babies suffer needlessly when death was their only possible outcome. I felt so mad at God for making me choose my daughter's death. I knew in my heart that letting her go now was the only choice I could live with.

Four days after the news of Lyndie’s condition, I went to a clinic and had my “therapeutic abortion” started. The doctor inserted lamaneria wicks into my cervix to begin dilation. The doctor at the clinic had been a complete ass and told me, “Well you’re still young, you can try again.” I tensed up and cried uncontrollably during the insertion of the wicks and he snapped at me and told me I was making this much worse than it needed to be.

I was sent home with a prescription for ibuprofen. Five hours after the insertion had taken place, I was screaming with pain. My sister called the OB on call at my regular OB’s office and that same kind doctor from the hospital, who had understood what I felt, called in a prescription for a painkiller and said to call him back if that didn’t work.

My sister stayed up with me all night as I labored at home in my bed. Thank God for sisters. I vomited and shook all the way to the clinic. I was scared and sad. My sister stayed with me until the IV meds took effect and I was out. I was glad that the clinic doctor did not come talk to me before the procedure. He was the last person I wanted to see.

I am not sure how long I was at the clinic. I remember sitting on a couch and looking at another young girl who had just had the same procedure done. She looked so relieved. I sat there on the couch and cried. The staff at the clinic were wonderful to me. I was grateful to them. My sister took me home and I slept the rest of the day.

I had some really rough days following Lyndie’'s death. I took a few weeks off from work. A few co-workers and friends stopped by the house to check on me. I received many sympathy cards in the mail, lots of e-mails and many phone calls. My friends and family were very supportive and loving. Luckily my co-workers have seen the death Lyndie would have endured and supported my decision to let her go to God and not make her suffer.

I did have a few friends that did not support my decision, and they made some off-hand comments to me. One friend found out she was pregnant with her third child as I was losing mine. She told me she was not going to have any testing done because she was a good person and God wouldn’'t let that happen to her baby. That really hurt me. I just told her that I hoped her child would be okay and that I hoped and prayed she would never be faced with the choices I was faced with.

Today is the one-year anniversary of Lyndie’s birth/death. I miss her so much and I still long for another baby. I pray to God about it. He has brought a wonderful man into my life and we have talked about getting married. I don’t know what path it is that God has put me on, but I know that my life was changed dramatically. I got through the first year without my daughter, it hasn’t been easy and there are days that I still cry. It doesn’'t hurt so much anymore when I hear a friend is pregnant or I get invited to a baby shower. Life goes on. I know that I have a very special baby angel waiting for me in heaven.

If you have just learned that your baby has a grave birth defect and you are making the very heartbreaking choice to end your pregnancy know that I am praying for you.


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