Sophia Moelk

Sophia’s Story

Sophia Moelk T18
Sophia Moelk
Mosaic Trisomy 18
Alhambra, IL

A good place to begin would have to be last year Friday October 22, 2010. I was 5 months pregnant with our fourth child. I went to the doctor to have a typical ultrasound done. We were finally going to see if I was going to have a son or daughter. It didn’t matter to us, we would love the child the same. We were so excited, it was like starting all over due to the age gap of the first three children. At this time my son Dakota was 15,  My daughter Kayla was 12, and my other daughter was 10.
I went to the appointment with my sister in law in my husbands place. He wanted to be there, but he too had an appointment that day elsewhere. However, we told him we would call him immediately once we found out the gender of the baby. The appointment seemed very typical, short friendly conversation with the tech and a fuzzy picture our bundle of joy on the screen. Everything was going smooth at first, then I noticed the tech was taking measurements over and over and seem to be taking a long time getting the information. Finally, she looked over and said ” I think you are having a little girl!” I was so excited I secretly wanted a little girl. My husband wanted a boy, but would be just as happy having another daughter. The tech got up and said that she would be back. As soon as she left we called my husband with the exciting news.
As I got off the phone with my husband, the doctor walked in with the tech. I thought this was odd since I don’t remember ever speaking with the doctor right after the ultrasounds with my other children. However, it has been around a decade since I was last pregnant. He came over to me and was real blunt and serious. He explained to me that he saw some indicators that something may be wrong genetically like Trisomy 21 (Down Syndrome) or Trisomy 18 (Edward Syndrome) and would be a great benefit if I had an amnio done. That way I could know my options. OPTIONS!!!! WHAT OPTIONS DID I HAVE WHEN I WAS ALREADY 5 MONTHS PREGNANT????!!!!He explained that my baby had two choraplexus cyst on her brain and she seemed to be one or two weeks behind in growth development. The cyst should go away he explained, they were an indicator though. So I put a brave face on and agreed to the amnio, thinking the baby’s due date was wrong. That would explain her being small.
So right there and then he did an amnio on me. It was painful enough getting one, but he was unsuccessful on the first stick and had to stick me twice to extract the fluid. He explained to me what each syndrome would consist of. I was familiar with Down Syndrome, but had never heard of Edward Syndrome. This syndrome was said to be much more severe than Down syndrome. He explained to me that with Edward syndrome that the babies usually have small heads, major heart defects, small in stature, and in many cases very short life span. He told me that only 10 percent of babies are born alive, only 5 percent of those make it to their first birthday, and the odds decrease even more after that. When the test was over, he told me to look out for the results within a week.
Only three days later that Monday I received the phone call. It was the doctor himself to give me the results personally. He then told me that the results confirmed that my baby was a girl and that she had full trisomy 18 (Edward Syndrome) and asked what I planned on doing. I told him I was going to continue my pregnancy, after all I would still have to deliver the baby in the event of early induction aka early termination. I told him that I am leaving it in Gods hand to make the decision on how long her life should be. He also asked me what I planned on doing for her medical care. I told her I would give her what ever she needed medically. He then told me that she would never understand life like we do, because she will most likely be severely mentally impaired and the kindest thing I could do is take her home so that she could die in my arms and not in a hospital in the arms of a stranger. I could not believe he would judge me like that or tell me that because she was going to be mentally impaired that she didn’t deserve the best medical treatment. I hung up the phone with a face full of tears. My husband was at school, so I called him to come home immediately to tell him in person.
When he came home I burst into tears and told him the terrifying news. He began to cry too. What where we going to do and how were we going to tell the other children? Within a few weeks we let the them know so we as a family we could prepare mentally. It was extremely difficult to prepare mentally for an outcome that was supposed to end in tragedy.
So we decided to take month by month pregnancy pictures to celebrate every month she survived the pregnancy. I wrote love notes to my baby with each picture.  As hard as it was to go on month after month watching my belly grow that would possibly end with having a still born, I still held strong for her, my children, my husband, and myself. Amazingly, she kept on living month after month. Eventually it was time to deliver.
The doctor that delivered was to deliver her told me that she had never delivered a live baby with her syndrome. I guess this was to further prepare me of the possibility of her being still born or dying shortly after. My baby was breach and we were unable to turn her to come out head first. The doctor still insisted it was better for my health that the baby to be born vaginally rather than a C section. Not even considering my baby’s health, because to her my baby would most likely not make it. She was going on the diagnosis of trisomy 18 and other test that indicated a fatal heart condition. She was not even considering here we are she made it to the end of the pregnancy, she was that 10 percent!!!! So there I lay all day on petosin and an epideral and because of her being breach she would not open my cervix more than 5 cm. After a while her heart rate altered because of the stress and I had to lay on one side to ease the stress on her. The doctor wanted me to turn off the monitors so I didn’t know when she passed away. The nurses on the other hand were a God send. They respected that I wanted time with my baby, even if it was for 5 minutes. They informed me that it was my choice for the C section and if I  didn’t get it soon I may not have my time with her. I could not believe my ears….MY CHOICE!!!! I love those nurses to this day. So, I told my doctor I wanted the C section so I would have my time with my baby. She was not very nice about it and seemed rather annoyed, but agreed to it. After all, it was MY CHOICE!!!!
So once she opened me up she found out how wrong she was. SHE WOULD HAVE HAD NO CHOICE FOR THE C SECTION. My baby was stuck, a t had to be cut to get her out. Finally, she was out and I have to admit, I thought she was already gone. She was grey and purple and I couldn’t any movement. My husband looked over at her and told me how beautiful she was.They didn’t even suck her out that well and brought her to me with minimal oxygen blowing in her face. She looked gazed and little motion with little bubbles out of her mouth, I didn’t hear her cry. They brought her over to me and I thought she was absolutely beautiful with of brown hair. Then the most beautiful thing happened, I touched her cheek and then she stopped gazing and looked right at me and let out a cry. SHE WAS VERY MUCH ALIVE!!!! My husband and I were overjoyed that God gave us such a blessing. We went in the delivery room gloom and doom and left the delivery room with a miracle that God very graciously gave us our Sophia Faith. Her middle name being Faith because of our ever growing Faith in God!
t was such a wonderful time. My other children got to hold their sister alive! She was so little only 4 pounds 7 oz and 17 inches long. Other than being small no one could explain how this little baby that was to have a fatal syndrome and heart condition was doing so well. They told me before she was born she most likely wouldn’t be able to suck a bottle or breath on her own, but yet she did. They told me Three days later we took her home, which was standard if you have a baby they think is fatal. So the baby can go home to dye in the comfort of their own home.
They following month was so scary. I was terrified that any day might be the last day or that one of my other children would find her passed away. Again she was so healthy and yet they kept telling me that she was fatal. So we decided to have her retested to see if it could give us any more information. What a wonderful thing that was. God again blessed us. They told us that yes she does have a heart condition, but it was not fatal. SHE WAS GIVIN A MISDIAGNOSIS! They told us in addition that yes she does have trisomy 18 but she was mosaic, meaning not every cell was affected.They sampled 20 cells and 18 of them were but 2 of them came up normal. This explained why she was doing do well. Since then she has been given a g button to feed her because of aspirations and we have spent numerous days admitted in the hospital. She had respiratory issues in the past, because of congestion due to her swallowing difficulties. She was so sick with pneumonia a few months ago and she was put on a vent and the doctors were scared she wouldn’t be able to come off of it. However, she proved them wrong and was able to be weened off successfully. She is the one of strongest people I know. It fills my heart  so much seeing of how her siblings love her so much. They have so much patients and love for her. She really has made our family strong. Sophia is so loved we argue on who gets to hold her and for how long. She receives therapy and maybe one day she will be able able to walk and talk. However, that is not important to us. The fact that she is alive and well and is a part of our family. Even if she never does walk or talk we will always love her for who she is, just how she is. She smiles, loves to move her arms, and enjoys kicking her feet. She especially loves taking a bath. Even though she is moderately hearing impaired and partially vision impaired, we feel that she is aware that we love her we feel she loves us back.