Charlotte was a surprise from the beginning. We weren’t planning on trying to get pregnant for another year but as we have learned, some things are better out of our hands. I had been very tired and took a pregnancy test at work on a whim, finding out to the joy of the nurses in the health clinic that Zar and I were on our way to parenthood.

The exhaustion continued until week 12, and by then we were pretty used to the idea of Charlotte (although I was sure she was a boy) -and things were falling nicely into place. Then my AFP came back with a 1 in 84 chance of Downs. Such a tiny chance, but as soon as I heard the news I burst into tears and Zar had to rush over and rescue me from work. We went in for an ultrasound at 16 weeks and learned that we were expecting a girl (another surprise!) and that she looked absolutely perfect and the doctor said our chances of trisomy 21 was more like 1 in 100, while of course is still high at age 24, but still such a small chance. She was so cute and was bouncing all over the place-I was shocked I couldn’t yet feel all that movement in there. However, the doctor wanted us back in a month to re-evaluate my low-lying placenta.

The next month was worry-free, I began looking at nursery themes and thinking of baby girl names-Ella, Morgan, Bridget, Charlotte…

In week 21 I went back to the neonatologist, who announced my placenta had moved up and was no longer a concern. However, he felt he had to mention that he did see some increased nuchal translucency-some fluid collecting on the back of her neck. He said her level was borderline but he felt he had to mention it due to our increased risk of trisomy 21. After an hour of tears and talking, we opted for the amniocentesis for “peace of mind.” The doctor felt that it was for the best so I didn’t spend my whole pregnancy in fear. The whole way home I bawled because I had put my baby in harm's way just by getting the amnio, for my selfish need to know.

During the weeks of waiting I began to see a little dark haired girl with features like Down’s syndrome kids in my dreams. Everywhere I looked I would see a special needs child and my heart would be so full I would cry. We didn’t tell our parents about the amnio because we didn’t want to worry them, but as the days went on I began to feel like these would be the last few days that were relatively worry-free.

The amnio came back and again, I received a hard phone call at work. I wasn’t at all surprised to hear that something had been found, but it wasn’t trisomy 21, and they needed blood from my husband and me to continue the tests.

More waiting. More certainty on my part that things were not “all okay” as everyone tried to tell me. I heard countless stories of misdiagnosed babies, all ending with “and that baby turned out fine and just won a noble prize” or something to that effect. I would nod and smile. Even the doctor said we shouldn’t worry, that he wasn’t worried, that everything still could turn out fine, and we could put this big “scare” behind us.

Another awful phone call at work, asking us to come in for the results as a couple. Clearly not good news. The sorrowful tone grew when the receptionist led us back to the doctor’s office with a box of Kleenex in her hands. The doctor told us Zar carried a balanced translocation-which I had read about in a nursing textbook and already had a feeling about-and that our baby girl carried an unbalanced result of this--partial trisomy 16, partial monosomy 9. He said this was not good news. He said that this baby would not be born alive, but if by chance she was, she would spend her life in an institution hooked up to a dozen machines and stare at the ceiling until she died. He said she would never recognize us, or know any feeling but perhaps pain. He said we should terminate the pregnancy and that our chances for recurrence were small-only 12% due to the fact I should miscarry whenever this happened. Just not this time, not yet. When we adamantly said we wouldn’t terminate, he shook his head but offered to take a look on ultrasound to see “what else had developed.” She was still beautiful, and still growing. He mentioned her stomach looked a little odd, and maybe her liver too, but she was still looking okay. He cautioned us to be prepared for a miscarriage at any time.

He led us out the back entrance where we both collapsed in the hallway and cried in each other’s arms. We walked past other pregnant women on their way to his office, sobbing, and they stared at us with terror on their faces. We began the task of telling our family, calling our friends. Closing the door to her room. That night we named her Charlotte. That night we put her in God’s hands, but I prayed that I might miscarry so this pain would be over sooner. That night we didn’t sleep at all.

We were overwhelmed by all the advice we got to end the pregnancy. We are members of the Mormon church and had always been taught that abortion was wrong. However, our doctors, our family, friends, even our bishop said that in this case, it would be okay to end the pregnancy. We began to consider it, and finally decided it was the right thing to do. We began to make preparations to fly to Colorado for the procedure. I told my boss what was happening and called the clinic to make an appointment. They told me about the process, and I nearly threw up. I knew this wasn’t what was right for this baby. I hung up the phone.

We were blessed with the opportunity to meet with our families with a member of the Qourm of the Twelve, the leaders of our church. We told him our decision, and he said that although it was our choice, it was not the one he felt was right. He said Charlotte’s life would be worth it whether it was 1 second or 99 years. He said he felt we were carrying a remarkable spirit. I was instantly calmed. I was so relieved to not have to fly to Colorado, to again place this pregnancy firmly in God’s hands and let him lead us. It was the first time in weeks I wasn’t in despair.

At first I was terrified for the rest of the pregnancy-five months to go of knowing I could lose this baby at any time. I was afraid of people asking me about my pregnancy as I got bigger. I was afraid of becoming too attached. My fears were unfounded. I did have awful days when I went home crying, when I pleaded with God to take this baby girl home before her due date came so I wouldn’t have to watch her die. For the most part, however, I was surprised by the peace I felt. I was showered with compassion from everyone around me, I met so many wonderful people by chance who had been through similar experiences or had wonderful advice to give. I went through my pregnancy with three women at work who were also pregnant and due within weeks of each other, and although it was awkward at first, I loved comparing stories and symptoms as time went on. I grew closer to God, to my religion and to my husband. I began to grow close to Charlotte.

We gave her the middle name of Grace a few weeks later-making her name Charlotte Grace-meaning “small and feminine gift from God.” I knew she liked tulips and the color purple, and that unlike me, she didn’t like country music very much. I was surprised at how much joy she brought me, and when things began showing up on ultrasound I was still thrilled to see her and not at all sad. She developed trigonencephaly-a triangle shaped skull, rocker bottom feet, and liver problems. She also had lots of hair visible as a halo around her head on ultrasound, sweet little fingers and beautiful lips.

Life got harder as my due date approached. I wasn’t able to sleep anymore, and the heart burn was terrible. Still I wished I could keep her inside of me forever, feeling her move and kick and imagining her listening to us talking about her. I began to be afraid for her birth. Afraid of how she would look, whether she would breath. Zar and I wanted her to breathe so badly. We prayed that she would take a breath and we might have the chance to hold her for awhile with our families, and give her a blessing. I was terrified when I didn’t’ feel her move for a few hours. I was scared of facing the possibility of losing her during birth.

When it became too much to take-I was 40 weeks along and no where near ready to dilate, we decided to induce. We checked in to the hospital on June 29th at 7:00pm. 18 hours later I couldn’t take anymore. We were watching her heart slow with each contraction, and still I was only dilated to 1.5. My wonderful OB said that had this been a “normal” situation, she would’ve been born by emergency c-section hours ago. He suggested we break my water and hope I would begin to progress. He made it clear he felt we needed to prepare ourselves for a stillbirth. I said I couldn’t do this anymore, I was exhausted physically and mentally and I needed to meet her soon. We opted for a c-section. However, due to the fact that this wasn’t a true “emergency”- the baby wasn’t expected to live anyway-I had to wait two more hours waiting for the OR. They had to keep the other room free for “true emergencies.” Miraculously, as soon as we decided to do a C-section, Charlotte’s heart sped up and she did fine for the next two hours while we waiting and visited with family.

At 4:16pm on June 30 Charlotte was born. She was HUGE-6 lb, 5 oz-in fact my incision was made too small and a nurse had to kneel on the table to help to push her out. She had tons of dark hair and looked so beautiful. She was still and wasn’t breathing. However, that first moment we saw her was so incredible, it was okay. We had left her in God’s hands and we got to see her, full term. Even if that had been the end I would have NEVER regretted carrying Charlotte to term. Zar and I smiled and cried and they took her over to clean her up and give her some oxygen-the only measure we decided to take in this situation.

Moments later another miracle - she cried! It was quiet and small, and Zar rushed over to be with her. Quickly she was given a name and a blessing, and I wished they would bring her to me so I could see her while she still breathed. I was sure she wasn’t going to stay. Charlotte was brought to me and was so wide awake. She didn’t cry, she just looked around and took everything in.

We were taken back to our room and the whole family spent two hours passing her around, crying tears of joy, taking pictures. As time went on, it became obvious that she wasn’t ready to leave us, and she got her first bath-right in mom’s room with the whole family there to watch and take pictures. During that night, Charlotte took a bottle with no trouble at all-after the discussion over whether to place a feeding tube because she wouldn’t nurse. She had some trouble at first keeping herself warm, but everything else was working fabulously. Her feet weren’t even rocker bottom anymore, as impossible as that sounds. On July 3rd, she came home to her beautiful nursery her dad and uncle had put together for her during her hospital stay.

Charlotte is four months old-we call her Boo. She weighs almost 12 lbs. She can see, hear, smile and is starting to giggle just a little bit. She is getting stronger every day and sees early intervention to help her reach her full potential. She can almost hold her head up. She sleeps through the night and eats like a champ. She has spent only a few days in the hospital due to illness and an episode of aspiration, and is on a tiny whiff of oxygen to help her give her an extra boost. Some days are still hard, some days she scares us, but most of the time she is nothing but a joy. Her whole family adores her.

The doctors are baffled. She has been called a miracle multiple times. We have no idea what to expect-will she ever talk? Walk? Sometimes we worry that she will leave us soon, but then we remember how grateful we are that we decided to carry her through, and that she was definitely meant to be here. No matter what happens she will be our daughter forever and whatever she does not accomplish here on earth she will accomplish in heaven. She is a miracle, a remarkable spirit, an absolute joy, and without a doubt, in God’s hands.



Erin would like to support any mom carrying a child with a difficult diagnosis, particularly with a rare trisomy. You can leave a message through this website, or more directly at: callstheshots@aol.comnopam (simply remove "no spam" from the end).