My Beautiful Celeste

Diagnosis: Trisomy 18

By Celeste's Mother

We came up with a girl's name immediately after finding out I was pregnant with our second child. A first and middle name, too. Celeste Joy. We both loved that name. Funny, we could never agree at all on a boy's name. I kept telling my husband, "We're going to go to our mid-term ultrasound and find out we have a boy, then what?" It never dawned on me that the sex of the baby would ultimately be my last concern.

The morning of Tuesday, September 11, 2001, I got up later than my usual 5 a.m., having taken the day off from work to go to the ultrasound. My 16-month old daughter was happy, like she is every morning, smiling and chattering away. I fed her breakfast, then turned on the TV to put one of her favorite children's shows on, hoping to get some light housework done before leaving for my appointment. I blindly changed the channel past the news shows.

My husband had just left for work, but moments after I put Eve's show on, he returned, running up the stairs hurriedly and back through the front door. He grabbed the remote and turned the channel back to the news channel I had passed by. I asked him what on earth he was doing. All he could say was, "Look!" while pointing at the television. I couldn't believe my eyes. Three thousand miles and two time-zones away, the World Trade Center towers were on fire, and news of two other planes going down was being talked about. The video of an airplane hitting the south tower was played while we watched in horror. We were stunned, sickened, and deeply saddened. We had no idea of the gravity of that day, both globally and personally.

At 9 a.m., I gathered up my little sweetie and loaded her into the van for the drive to pick up her daddy at work. We then headed to the ultrasound appointment. My immediate thoughts were excitement about finding out the sex. After all, my belly had grown, I'd felt my uterus stretching, and I'd been feeling my baby move since the 14th week. Everything seemed normal and I couldn't wait to meet my baby.

Once the ultrasound picture was on display, I handed the technician a blank video tape to tape the session. I could see my baby moving around and was thrilled. After some time, she looked concerned, spending way more time on the heart than I thought necessary. She was able to tell us it was a little girl. I smiled because I was hoping for a sister for my little Eve. She spent time scanning the brain, then she said she was going to get the perinatologist.

The doctor came in, viewed my baby's heart and brain and it is there that our nightmare began. He asked me why, at age 39, I was refusing the amnio. I explained that in the beginning of my pregnancy, the first ultrasound to date the pregnancy turned up an empty sac, yet 2 weeks later, a fetus was discovered. During that time, I was on an emotional rollercoaster. I figured I didn't want to risk anything that may end up in a miscarriage.

He urged me to reconsider the amnio because he was concerned by what he was seeing. He then shared with us that the heart appeared to have 3 chambers instead of 4, and that there were multiple choroid plexus cysts on her brain. Either condition by itself may not pose significant risk of a chromosomal disorder. However, the combination, along with a slightly underdeveloped jawbone, were indicative of a Trisomy 18 baby.

To that point, I'd never heard of Trisomy 18. I asked what that meant. He said, "It's pretty much a fatal prognosis. It's not compatible with life." "What?!" I shouted. I couldn't believe what I was hearing, though I knew this doctor had years of experience in his field. He was telling me the unthinkable.

I demanded an amnio on the spot. He asked me to think about it and perhaps schedule an appointment to talk with a genetic counselor. I said, "No, I want the amnio right now." I'd had an amnio with my first pregnancy, so I knew what was involved. He performed the amnio and the procedure went very smoothly. I left the doctor's office in a state of shock. How could this be happening? We'd had a completely normal and uneventful pregnancy with my first daughter, why not this time?

I immediately began my quest for information on Trisomy 18. Nothing I read was positive. The general stats are something like this: 40% of Trisomy 18 babies die in utero, of the ones surviving to birth, 95% die before age one. I read stories of people who'd had Trisomy 18 babies, hoping against hope that there might be some chance that everything could still turn out okay.

That was not the case. Most of the websites I visited were memorials or medical research sites with more statistics confirming my initial information. Problems included severe mental retardation, digestive problems, heart failure, renal failure, respiratory failure, blindness, deafness and extreme physical limitations.

I later found out my cousin cares for an adult Trisomy 18 mosaic woman, aged 21. She cannot walk, talk or care for herself. She wears diapers, shrieks and generally does not know what goes on around her. Her parents divorced after she was born, neither being able to care for her. Ultimately, she was adopted by a women who is now unable to provide her with all the care she needs. Editor's note: Trisomy 18 mosaic is often less severe than full Trisomy 18, where every cell is affected.

I went from research to decision-making over the course of three days. Each night, I would study her ultrasound, comparing her video frame-by- frame against my first daughter's ultrasound video. I was searching for some obvious differences. I saw some differences in their behavior and movements, but not much beyond that. I tried to remain hopeful, though I did notice she never opened one of her hands and the doctor had not mentioned that.

My husband was quite firm on his decision that it would be unfair to bring a special needs child, particularly one with extreme disorders, into this world only to have her suffer needlessly and die. "A healthy baby struggles enough with life in the first few months. Imagine how hard it would be for a baby with a heart defect, brain damage and potential feeding problems," he reasoned.

I knew then and there that I had to think of other people besides me and what I wanted when making my final decision. What would a situation like this do to my marriage? To the relationship I have with my other child? To her self-esteem? To our financial future? What if she outlived me? Who would care for her? I talked with co-workers, family members, and close friends in an attempt to gather as much support and information as possible. I was stunned to discover that I might have to think about whether I'd want to see and hold the baby should I decide to end the pregnancy. That thought had never occurred to me, yet it ended up being the most important thing I'd chosen to act upon.

After all the research and all the talking, I wrote down questions that I would have for the doctor should the results come back positive for Trisomy18. On the 8th day, September 19th, I got the call at my office. "I'm sorry to have to tell you this, but the test came back positive for Trisomy 18." The words were like bullets ripping through my heart and mind.

I tried to compose myself enough to ask my questions. My doctor was supportive of any decision I made, which helped. I asked if there could be a mistake, but she answered with, "The results correspond to and confirm the ultrasound indications, and besides amnios are extremely accurate."

I found myself in a surreal conversation over the next few minutes:

Me: What options do I have if I choose to end the pregnancy?

Dr.: We can schedule a D&E right away or we can wait until next week.

Me: D&E?! way, what other option or options do I have?

Dr.: The other option is induced labor and delivery.

Me: What happens to the baby in an induction? I mean, how does the baby...die?
(I couldn't believe I was asking this question!)

Dr.: Typically, the compression from the contractions stop the heart prior to delivery. In some cases, the heart will continue to beat but not for
longer than one hour.*

Me: Okay, that's the option I want. How soon can we start the procedure?

Dr.: I think perhaps you should talk with your husband, then meet with a genetic counselor and then make a final decision.

Me: Oh, no...see, my husband and I talked about this at length and we agreed on what will happen. I've been feeling my baby move for three weeks now and going another day with her moving inside of me, knowing what I know, will not work for me. We need to start the procedure immediately. What do we do to get the wheels turning now?

Dr.: I will contact the diagnostic center and explain to them your decision and you'll need to call them to confirm and set up the appointments.

Over the next half hour, I made some 10 phone calls to family and friends, finally reaching one of my closest friends. Saddest was that I could not reach my husband. He was on campus at a state university and I would not be able to talk to him until nearly 8:00 that evening. I took comfort in the knowledge that we had talked at length about what would happen with a Trisomy 18 diagnosis. My friend was shocked and wanted to come to my office immediately, but I told her to wait until I called her back after I had a firm appointment and could she please take me to the hospital if they got a room? She said it was no problem; she is a truly good friend.

I had my first appointment that same morning at 11:00. I was given lamicel to soften the cervix. I went back at 4:30 p.m. and they inserted stents to dilate the cervix and a fresh dose of lamicel. I went home to another awaiting friend who had dropped everything to come and stay with my daughter. She, too, is a truly good friend.

I was a zombie that night. I realized it was my last night with my little girl and I couldn't bear the sadness. I touched my belly like I did every night, feeling her move around and just could not believe my life had come to this sort of a crossroad. I barely slept, and my first daughter had a hard time going to sleep that night. She must have sensed my tension and sadness. I rocked her quietly in the dark for nearly an hour, not wanting to let go of either of my girls, both alive and with me at that moment.

It was 6:30 a.m. when we arrive at the labor and delivery ward of the hospital. I told the nurses I was there for an elective termination: The words seemed so harsh, so clinical somehow. The nurse took me to a room at the far end of the ward, away from actively laboring mothers, thankfully. The weight of what was happening began to hit me and I broke into sobs.

The doctor finally arrived at 8:00 a.m. to remove the stents and lamicel and to insert the prostaglandin-like drug to induce contractions. I felt my girl move later in the morning and I became hysterical. The nurse offered valium and I thankfully accepted it. I slept a short, but sweet sleep, only to awaken to the horror I tried to escape. I was saddened beyond comprehension. I like to think of myself as a sane, together and strong person, but I was none of those things that day.

One of the nurses said, "You should have delivered by now," as if it was helpful. It wasn't. It only reminded me of what was going to happen to my sweet girl.

My water broke with a vengeance at 1:30 p.m. Again, I went into hysteria. My husband called the nurse, who came and checked me. Her sensitivity and calmness was like a blanket to me. I calmed down enough to realize I hadn't asked what would happen to her body after birth. She told me since the baby was less than 20 weeks (she was about 18.5-19 weeks), that they would not issue a birth or death certificate, nor would they offer burial or cremation. I would have to contact a local funeral home and arrange it all.

I couldn't cope with one more decision that day, so I didn't do anything. I regret that now. I asked the nurse for another dose of valium because both me and my girl needed calming down. She was so active, it was horrifying. The IV drip was turned up a little too high, so the valium felt like fire in my veins. I felt I deserved the pain. The nurse turned the drip down and the pain vanished in an instant.

I slept until 3:30 p.m. The contractions got stronger to the point where I felt it was time for an epidural. I could not sit up straight, so most of the meds went into my left side. At 5:20 p.m., my husband was changing the TV channels and I asked him to stop at Sarah MacLachlan singing a live version of "I Will Remember You." Tears filled my eyes. I had dedicated the song to my father's memory at my wedding, since he could not be there to walk me down the aisle. It dawned on me that I hadn't thought about him until that moment. I knew then, in my heart, that it was time for me to let go of my girl. Dad was there to take her home.

At 6:20 p.m., she was delivered. A tiny, perfect 9 inches and 6 ounces. I had made a compromise with my husband that they would bring her to me only after he had a chance to leave. He couldn't bear the thought of seeing her, he knew it would break his heart into a million pieces. But for me, my fear was not what she would look like, rather my fear, too was the thought of how much sadness I would feel upon seeing her.

The chaplain came and sat at my bedside, sharing his stories of loss; a first term miscarriage and a 12-year-old child to a brain tumor. Somehow, his stories did comfort me, though I was filled with anxiety waiting for my daughter to be brought to me.

Finally, the nurse wheeled in a bassinet with a tiny bundle in it. I saw her lifting up my baby and turning toward me in my mind's eye as if it just happened. I thought I would die of heartbreak at the very moment she was placed in my hands. I studied her face and saw a familiar nose. I knew this was my girl. I sobbed uncontrollably as the nurse hugged me.

I asked the nurse to open the blanket so I could see all of her. Her tiny hands and feet looked perfect to me, though the nurse did point out a clenched right hand and turned in right foot, which can be typical of a Trisomy 18 baby. All I remember is her face. I told her how sorry I was that this had happened and how much I loved her. The chaplain blessed her. I said goodbye, and "your name means from the heavens and to the heavens you shall return," realizing days later that I'd forgotten to kiss her on the forehead, like I do my other daughter and that I wished I'd held her longer. More regrets.

The nurse wheeled her away and the chaplain spent a few more moments with me, finally leaving me alone. I wept non-stop for what seemed an eternity, though in reality, it was more like 15 minutes. Then, I felt at peace that I'd seen her face. She looked peaceful, asleep. I keep that picture in my mind to this day.

The nurse returned and asked me if we had a name for the baby. I said, "Yes, it's Celeste Joy." She responded with, "What a beautiful name!" She returned with a memory box, a card with her footprints, her tiny wristband and some polaroid pictures, then she gave me a tiny ceramic heart-shaped ornament. There were two hearts,one inside the other. She took the smaller one out and said, "This heart will go with Celeste and this one will stay with you. It's to remind you of the bond you have with her." I started weeping all over again. The nurse then left the room.

The TV was on WWF (World Wrestling Federation) and I couldn't get up to change it. Where in the hell was my husband? Another 20 minutes went by before he finally returned. In retrospect, I can laugh at that moment. I was so frustrated with his absence, being relegated to watching grown men and women act like idiots. Yet, now I understand he was quite afraid of coming into the room while the baby was still there. He'd no idea how long I'd choose to spend with her.

We were hopeful that I'd be up and walking before 9 p.m. and could go home to see our other daughter. We could not have been more wrong! The epidural had left my left leg so numb that I could not get up and walk with it until 3:00 the next morning. I had breakfast in the hospital, showered and got dressed. My husband was anxious to leave and was puzzled at my "dragging my feet." "Don't you want to go home and see Eve?" he asked. "Yes, but I know she'll be there when I get there," I replied. Something subconscious was keeping me there and it would surface as I stepped outside of the hospital doors.

I collapsed in a weeping clump into the front seat of our car. I was devastated that I was leaving the hospital without my Celeste. I felt like a horrible mother, abandoning my baby. I cried for the entire duration of our car ride home, some 35 minutes. I composed myself enough to come through the door and see my daughter, Eve, smiling and happy. She saw me and squealed, "Mama!" and came running to me. I forgot about everything else for that second. I realized what a miracle it is that she is here with us.

It's only been this week that I've begun to digest the magnitude of the terrorist attacks and I feel sad all over again. I can only hope my friends did not think it selfish of me to have not wanted to talk about the tragedies of terrorist victims, feeling I could only think of my personal tragedy at the time. I cannot imagine the anguish of the families of these victims, not knowing what happened to their loved ones, and worse, not having any closure for their loss.

I've since told my story some 40 times to friends, family and co-workers. I feel obligated to help people understand what Trisomy 18 is and what options one has if choosing to end the pregnancy. I know in my heart that my girl existed...I know because I saw her, held her and talked to her.

Not a day goes by that I don't think about her and miss her immensely. I smile when I call on my memory of her tiny, perfect and peaceful face. I talk to her often. My heavenly little Celeste, you will not be forgotten.

Mommy to Eve, 5/1/00 and Celeste, ahc 9/20/01

*Editor's note: Labor and Delivery procedures now often include a injection by amnio to stop the fetal heart prior to delivery, preventing live birth.


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