Like a Lamb

Diagnosis: Trisomy 18

By Sienna Morgan's Mom

Sienna Morgan - She came and left us like a little lamb

I sit here a day after my loss with my mind spinning. My thoughts are logical and rational yet at random moments I am overtaken with a burst of emotion filled with grief and loss- sobbing uncontrollably. It is bizarre to live between these two uncomplimentary worlds thinking of the awful thing I just did to my precious, little, innocent baby girl but also with the knowledge that what I did was actually a sacrifice, to protect her (and me) from future pain and suffering. It was the right decision but it was just so hard to have to make it.

My husband and I got married later in life and have been married for almost 7 years. We travel extensively for work together and we were enjoying our lives. We love each other and we love our work. We felt like accomplished citizens doing good for the world. We are career oriented people who were not completely decided about having children. We weren’t known to be the most emotional individuals, living lives as scientists mired in constant rational thought and deep analysis.

While I always thought I would have children when I was a little girl, life just got in the way and it never seemed like the right time. But, time kept passing and I wasn’t even sure what the “right” moment was anymore. My husband was less keen on having kids but was open to the idea so we made a compromise. I decided to get off the pill when I was 34 and leave the decision to some higher power. If it was meant to be, it would happen on its own. We would offer no extra help to move it along. For 2.5 years nothing happened but as I said, we were not set either way.

While on a 2 week trip overseas, I was expecting to have my period but it never came. I thought it was the stress of traveling and it would start up once we got home. My husband thought I was just imagining it because the previous month I was one week late and I should just wait it out but I just knew something was different so I got a pregnancy test. It came back positive. I showed him the stick and he was shocked and dare I say disappointed. It was a lot to take in, even for me. I knew the chance of carrying this baby to term with my age (36 almost 37) was reduced so I kept the news under wraps. I was personally, silently waiting to miscarry. I didn’t want to get my hopes up and I knew the first 12 weeks are precarious. I only told my closest family members. As days passed and the baby grew, both my husband I started to accept it more and more. I still wanted to keep it a secret from the rest of the world until I knew 100% everything was O.K. Maybe this was my defense mechanism, or mothers’ intuition that things would NOT be O.K.

During my pregnancy I never had morning sickness or cravings. My sister was pregnant at the same time, about 4 weeks ahead of me and she was sick all the time. She told me morning sickness was a good sign that the baby is developing and healthy. I questioned it but thought my baby was fine, I am just in better shape than my sister and I eat a well balanced diet so my body was just better prepared for this. I felt lucky that my 1st pregnancy was going so smoothly and effortlessly. I barely showed and didn’t gain weight, except in my chest- which was a good thing according to my husband. I was in an exclusive private club and felt like the luckiest pregnant woman ever.

My husband went away on an overseas work trip for 3 weeks by himself when I was 8 weeks. I did all the early doctor’s appointments myself and saw the little peanut on the screen. I would email him the photos and he started to get more excited. My first trimester blood screening and nucal translucency test came back negative for any problems. First hurdles overtaken – Phew, what relief.

The early ultrasounds looked good, everything seemed normal but I wanted official diagnostic confirmation that things were fine. I was initially going to do the CVS test but I could only do it at 12 weeks and we were scheduled to leave on a 6 week work trip overseas a few days after I would have to have taken the test. I was worried about complications or miscarrying and didn’t want to affect my trip. Even if they did find something on the CVS we still would be traveling and couldn’t do anything about it so I opted to do an amnio when we got back.

During the 6 week trip we traveled through many remote places in the world. I was watching my baby grow and I was so conscious about what I was eating and what I was doing. When I would lie down I could see her heartbeat in my stomach. I was shocked the first time I noticed my stomach pulsating but I used that as a clue that she was O.K. I would make signs and took pictures of my growing baby bump in all these exotic foreign locations with dates and names. I wanted to chronicle her extensive travel experience even before she was born to show her how worldly she was and hopefully instill in her a deep sense of curiosity about other places and cultures around the world.

I had my amnio scheduled for the day after we got back in the country. I was worried our plane was going to be late etc. but we got to the appointment and everything was fine. I was 18 weeks. This was my husband’s first appointment to see the ultrasound in person. The ultrasound came out perfect and my husband really lit up seeing this for the first time. She was moving, had a perfect heartbeat and all anatomical characteristics were in normal range. We got 1 4D ultrasound picture but at the time she had her hands in front of her face. Perfect little hand with 5 fingers shielding her face. They told us it was a girl. We were so excited. The Dr. said everything was perfect and she asked us again if we wanted to continue with the amnio. My husband was hesitant and questioned why should we even bother at this point because there was a chance of losing the baby during the procedure.* Every test up to this point indicated that everything was fine, no abnormalities had been detected. I too hesitated for a moment, but figured we were already there to do it and we should know with 100% certainty so we proceeded with the amnio. I was also due for my second trimester blood draw and usually you don’t do it if you do an amnio but the Dr said it was good to have the whole picture so I did that as well.

We had a small 4 day work trip planned after the procedure so we took more photos of our baby in new places. The 2 week wait was agonizing though. My husband’s brother was coming to the US with his wife and 2 kids around the time we would receive the amnio results. They had never been to the US and were planning this trip for a couple of years. We had a lot going on but we were always juggling a lot of things. I wanted to find out the amnio results ASAP to just get it over with. I was expecting good news but the test time seemed to drag on. I kept calling but they said the amnio test was delayed but… the 2nd trimester blood work came back negative for defects. YEAH! Everything was going as planned – both trimesters bloodwork, nucal translucency and ultrasounds were perfect how can anything be wrong? I was fully expecting a good call from the Dr. but I just wanted to go through the motion and hear them tell me everything was great so waiting for that call was still agonizing.

We had to pick up my husband’s family at the airport the Friday before Easter weekend, April 6, 2012. I was 20 weeks. This was the day I was told that the results would be ready – finally. Because we were traveling to the airport I asked them to call my cell. I didn’t want to miss the results because they left a message at home and then we would be gone for Easter weekend. As we pulled into the parking lot of the airport I got the call it was 2:30pm. The geneticist started out saying she got the results, but they were “complicated.” My initial reaction was okay, things aren’t definitive because the test was contaminated or something, but that was not to be the case. She said 10% of the baby’s cells had Trisomy 18 mosaicism. They did an additional test the FSH and found 6% of the cells with Trisomy 18. I was walking to the terminal not fully understanding what I was hearing. My husband was deeply disturbed but had to wait at the terminal gate to collect his brother and his family.

How could this be? Everything was perfect with the blood work and ultrasounds! They must have mixed up my samples with someone else, maybe these are false positives? There can be no other explanation. Right? I told my husband and we were in shock and crying and not knowing what to do. I felt so helpless, my head was spinning. I wanted access to the internet to understand more, what are my options? Can this be wrong? What is the error rate? What should I do?

We were still waiting for the arrival of my husband’s brother, and my husband said he would wait and I just needed to sort it out. I called my sisters and broke down. I called the geneticist back to get more info. She was compassionate and patient with my questions but simply stated that because it was mosaic they had no way of knowing exactly how it would affect the baby. The amnio only tests the baby’s skin cells in the placenta and about 10% of the tested cells were affected. We wouldn’t know and couldn’t test how the lungs, heart or brain were affected. It could be mild or it could be severe but the prognosis was the same, she wasn’t going to be normal. Most babies don’t even live past the first year if they are not stillborn. I just kept thinking – THIS CANT BE HAPPENING. It is a dream, there is an error, they called the wrong person. MY baby is fine.

That weekend was hard and I cried a lot -in private- while still trying to keep a happy face for everyone else. Read stuff on the internet, mulled over taking another test to confirm the results then decided it would actually be worse. What if the second result came back negative? Which test do you trust? I was already 20 weeks and the tests would take too long. I couldn’t bear being pregnant any longer knowing the inevitable. I knew I could legally terminate up to 24 weeks but I didn’t want to push it to the limit.

I always told myself that if anything was wrong with the baby I would terminate with D&C. I wouldn’t make my baby suffer and personally I didn’t think I was capable of handling a still birth or short life in an out of hospitals. It sounded so cruel to my baby but also my marriage and my life. I decided to terminate the following week. We were scheduled to do tourist trip to Las Vegas and Grand Canyon with my husband’s brother’s family. Timing couldn’t have been worse but I didn’t have a choice. I would come back early – so I booked my one way plane ticket and left to be picked up by my sisters. My husband was left alone to deal with the constant dark thoughts while playing tour guide. My husband would then drop his family off at a hotel and then come back to get me through the actual procedure.

The termination procedure took 2 days. The first day I had to go in and get Laminaria sticks to open my cervix. They had to do this in 2 steps. They started with 2 sticks waited a few hours then took those out and put in 12 more. It was not a pleasant experience and I had a bit of a panic attack during the first procedure. No turning back now. I was committed to my decision. They had to do a sonogram to see the placental placement and I saw my baby one last time. It made me cry and I didn’t want to look anymore. It was a fuzzy picture but she was moving and my heart broke and I fell apart. I knew what I was doing was making the best choice for our daughter and me but it is still heartbreaking to have come so far with such excitement and anticipation to only have it all end here.

I was told to come back the next day at 7:30am for the final procedure. They said I may have cramping and should not be on my feet that night. They didn’t want me to go into labor but gave me an emergency phone number to call if anything happened in the middle of the night. I was paranoid. I handle pain quite well but I didn’t know what to expect so I took the pain meds as prescribed just in case. I didn’t want to feel anything. Too bad the meds can’t shut off your thoughts too. The wee hours of the morning are the worst. Actually the night was quite uneventful and we both managed to sleep in between sobbing tear fits. My husband held his “girls” close that night one last time and then it was time to go.

I arrived at the clinic on time and they gave me 2 pills to keep in my cheeks to help dilate my cervix more. I waited in the room with a heating pad and blanket with my husband until they took me in after 2 hours. I was the first patient of the day. They strapped me in on the stirrups and gave me oxygen and relaxation meds through my IV. The doctor came in, introduced himself and asked me questions. I was then told that they are putting me to sleep and then the next thing I remember I am awake in the recovery room. I don’t know exactly what happened. I just asked after, if everything went O.K. and they said it did. I didn’t want to know more details. It is too painful to think about. I walked out after 30 minutes in recovery and that was it. No intense pain, no complications - nothing. After a week of anxiety, grief, uncertainty, it was over.

I know some women choose to deliver the baby on their own so they can see and hold their child, but I didn’t want to bond to something that I couldn’t have. The one good 4D ultrasound picture I had, I never saw her face as she had it shielded with her tiny perfect little hand. She didn’t want me to see. She was so considerate. She never gave me any complications during my pregnancy and she left equally uncomplicated- in and out like a soft, quiet lamb. She was meant to be in our lives but always as an ephemeral mystery. She knew she was never meant to be born. Her role was to show us that we do have love in our hearts and we DO want children. It brought my husband and I so much closer together. Our lives have more meaning and our goals have shifted. So many things that were so important to us both now seem inconsequential, unimportant. We never had this perspective before.

I try and look for the positive and we do want to try again - with actual planning this time. We know it may never happen or we may be faced with the same gut wrenching decision again but you have to get back on the horse. Life is meant for the living and those that pass through our lives temporarily sometimes do so just to remind us that we need to keep living and be appreciative for all that we have and are capable of enjoying.

I decided to write this story for two reasons. One it will help me get through the grieving process but to help others that are going through this as well. Reading other women’s stories made me feel better and I hope my story gives peace to someone else. We are all human, we are not alone (even though we feel like it at times) and there are others out there that truly understand your pain. This is all fresh for me but I can still see the good. I urge people that are having children to do the diagnostic tests and not just probabilistic blood screens and ultrasounds. All our preliminary work came out perfect. We almost didn’t do the amnio to get the confirmation because it didn’t seem necessary. It would have been horrible for us to find out after it was too late to do anything about it. I just can’t imagine.

This process was emotionally very painful but it was the fastest way to begin the healing, it like ripping off the band aid to give your wound the fresh air and sunshine that it needs to heal quickly. It would have only gotten worse and the pain would have only deepened the longer this pregnancy had gone on. Better to heal as fast and quick as I can and just focus on all the potential that the future might bring.

*Editor's Note: the risks of miscarriage after Amniocentesis ranges from 1 in 400 to 1 in 200. In facilities where amniocentesis is performed regularly, the rates are closer to 1 in 400. Amniocentesis Information: American Pregnancy Association


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