Learning Our Baby May Be Born Still

It’s not a secret that Levi and I need modern day medicine to bring children into this world. We have been greatly blessed to have constant progressing medical breakthroughs providing access to not only conceive but to bring children into the world safely.  I will forever be grateful for the miracle of our first daughter and for her health. Although, our son may only be with us a short while I’m grateful I have been able to carry him. 

Pregnancy has been very difficult for me not just getting pregnant but also enduring it. I get very sick with my pregnancies. To the point that up until birth I’m very medicine dependent. Being pregnant with our son has been no different; I even had to get IVs a few times just trying to somehow make it through. Luckily at about 14-15wks the medicine seems to become more affective even though I can’t stop taking it.  

Although this pregnancy hasn’t been drastically different as far as how my body reacts to pregnancy something never felt right. I have had lots of anxiety about our baby; I just knew this baby was a boy and that made me very nervous. This made me nervous because before Levi and I got married I had a very vivid dream that we had a baby boy that died of SIDS. Ever since that dream I have also feared that something would happen to our son. Once, we officially discovered that our baby was a boy my anxiety increased and along with it many more terrible dreams. The dreams were all different but essentially all ended the same.

My anxiety was high but I did my best to push it aside and just tell myself that it was all in my head. I got a few Priesthood blessings from Levi and they seemed to help, even just to allow me to sleep. I tried focusing on things like decorating the nursery, picking out the clothes he would wear home from the hospital, having thoughts like “how can I be a boy mom”, even getting referrals for his circumcision. I was planning all the things that I needed to bring my baby boy home. I have even collected a few boy clothes from friends. All the typical thoughts you have before a baby comes was my reality until his 20wk anatomy scan. 

The day of his anatomy scan my mother-in law called to ask me how I was feeling. She was aware that I had some anxiety. However, that day I felt completely at peace and just didn’t have any fear at all, in fact I was super excited. While the ultrasound was happening I could see him moving and rubbing his eyes kicking his legs, squirming as he should be. Seeing him there on the screen made me calm especially, because I struggled to feel him move much at all.  

The doctor came in the room after the ultrasound and asked the typical questions of how this pregnancy was going. I responded with “its been fine” informed him that still I am medication dependent but have tried to take a break to see how I would fair. The answer is poorly. After the general Q and A he said “well there are some things on your ultrasound that are a cause for concern”. Immediately I felt my eyes being to water and my throat tighten. That’s when my doctor took a pause and asked me “what is it your feeling right now.” I told him everything, the dreams the anxiety I was feeling and since I knew he was a boy all these feelings increased. He thanked me for sharing and had me move off the table to sit in a chair next to Levi so he could continue to deliver news. Thankfully a student was in the room and she helped Georgi navigate Cocomelon on Youtube to keep her busy and happy.

Levi and I held hands as he spoke and as he shared the red flags that appeared on the ultrasound. It seemed like the doctor would never stop listing issues, it never would end. He shared that the skin on the base of the head and neck were thick, there was a light in the left side of his heart, he seemed to have something wrong with his bowels, and his left femur seemed unusual in size.  Finally, the list stopped but he continued to speak. Telling us that all these issues individually aren’t cause for concern but all stacked together they seem to indicate a chromosomal problem. He suggested we get a Non Invasive Prenatal Screening NIPS. This simple blood test would help rule out trisomy 13,18, and 21. However, he wasn’t sure anything on the ultrasound necessarily pointed to those specific chromosome abnormalities but they at least could be ruled out. Levi asked a question, I’m not certain what it was. I’m sure it was regarding life expectancy. The doctor’s response said that trisomy 13 and 18 typically lead to fetal demise or in case of trisomy 18, death shortly after birth. For some reason that phrase “fetal demise” rang through my head.  

The doctor was very somber and sensitive. I appreciated his bedside manner and was grateful he spent upwards of an hour with us. Patiently and gently guiding us through the next steps. Setting up appointments with a specialist and scheduling genetic testing. Unfortunately, it was late Thursday and not much could be done until the following week.  Levi and I were pretty strong throughout the appointment. It wasn’t until walking to the car that I just broke down. 

I felt cheated in a way. I was feeling so anxious except for that day; I truly believed that I would get confirmation that it was all in my head. Instead, I felt like my mother intuition was so spot on and it devastated me. When we got home I needed to make Georgi dinner and as I was getting it ready those words of “fetal demise” sang in my head. I prayed in my heart pleading with God, I would take our little boy in whatever way he comes, I’d take care of his broken little body if I had to but please don’t have me bury my baby.  My head began flooding with all manner of scenarios. We didn’t get any indication of the severity of his condition just that he had one. 

It was difficult telling our families. Their reactions were all different. Some people expressed how sorry they were while others focused on the possibility of hope that maybe it was all a mistake. I had very little confidence in that.  Over the weekend lots of prayer and fasting happened in our behalf. Although, I was grateful for the prayers and fasting I had very little hope. I just began praying that the faith of others could be enough. I prayed that the confidence and prayers of those around me would carry a miracle through.

Levi and I both got priesthood blessings on Sunday. I don’t remember what Levi’s blessing said at all. Honestly, I don’t remember much of mine either. However, I didn’t feel comfort or peace. I was disappointed. I desperately wanted my blessing to reveal that all would be okay. That our baby would be whole or that he would at least be here with us. Instead, it revealed that what will happen is meant to happen and we will be blessed as we go through this trial. It made me feel like it didn’t matter how much faith I or anyone else had or what our prayers asked for. I wouldn’t get the outcome that I desired. I felt like I couldn’t ask for a miracle and that it would be an utter waste. I felt sadness and defeat. 

We continued in our prayers, as did others. Many gave me the strength and encouragement to continue to ask for a miracle even, though I struggled in doing so.

Eventually we got the results of our genetic testing. It was negative for trisomy 13,18, and 21.  I didn’t know how this made me feel. I was slightly disappointed because it meant that I still had no answer as to the condition of my little boy. However, I also felt relieved that it wasn’t trisomy 13 or 18 because maybe that meant his life expectancy went up. I still worried that maybe it meant something more severe than Down syndrome.

We waited 20 days until we were able to meet with the Maternal Fetal Specialist. Those 20 days were dreadful. I spent my time on the phone calling hospitals, calling NICU’s trying to provide myself with as many question that I could ask the doctor to get the most out of our appointment. I was able to prepare a total of 23 questions some regarding hospitals, delivery, and what to expect from other appointments. Others were directed towards our little boys condition and preparing for NICU treatments and possible extended stays. 

While we sat in the office waiting to be seen I kept thinking “what a horrible place to work, they must be delivering bad news all day”. However, the receptionist and nurses smiled and seemed cheery. Once we were called back and directed into the ultrasound room I got a lump in my throat and fought back tears. I just felt like I was going to notice something terrible or that we may have all those “red flags” be confirmed. The nurse was taking my blood pressure and I said, “It may be high” she just looked at me with little expression and responded, “I understand”. 

As I lay on the table I felt better and was able to compose myself. Knowing the Techs can’t share anything we kept the conversation light. Talking about what it’s like being an ultrasound tech, schooling and the scheduling, etc. Our little man moved quite a bit more than typical which I took as a good sign. Though I silently prayed he moved in the right position for a clear picture. 

The doctor came in again no true expression on her face.  She introduced herself than began to conduct her own ultrasound scan, as she shared with us what the techs images found. The first thing she said gave me so much relief “your babies organs look good”. But than she began to share with us about fluid build up in his abdomen and how his kidneys, bladder, intestines were just floating. Levi asked what that meant. She explained to us that fluid build up in one region isn’t too concerning but often times can lead to a condition called Hydrops Fetalis. Then she explained she could only see fluid in his abdomen so she wasn’t worried (based on the techs pictures). Then she moved to his head and said “oh” and paused the screen. She continued, “the pictures I saw didn’t really show this and I failed to appreciate this” as she moved the curser around the top of his head. We could see it, a thick ring around the circumference of his head. “I’m sorry, I’m going to have to retract what I just said, I failed to appreciate this in pictures. This is why I also come back and scan.” He had fluid in his head between his skin and skull. 

I didn’t feel anger towards her. I even told her that it was okay. In that moment I didn’t feel sad for myself or even for my baby. I actually worried that my doctor felt bad for having to recant what she said previously. I thought, “That must have made her feel sick having to confess her mistake.” I sympathize for her and the difficult news she so frequently must deliver. 

    

She moved to his profile, again we could clearly see where his skull was and where his skin was, floating high above his forehead and the bridge of his nose.  She moved to his feet (the tech struggled getting a picture) telling us that there was concern of his feet being clubbed but as she was able to get a better picture we again could see where his bones were and his skin floating like a little pillows above the bridge of his feet. His feet weren’t clubbed but filled with fluid. 

She had me get up off the table and I cleared my stomach of blue gel as she went and reviewed some more images. She came back and told us that our baby fit the criteria for Hydrops Fetalis.  

Hydrops Fetalis. What on earth did that mean! 

She explained the condition, this meant our baby had a 90% chance of passing before birth. She further explained that this condition is brought on by many different causes such as infection or cardiovascular defects. However, she felt confident to rule those out for a number of reasons that I honestly couldn’t fully remember (though we tested him specifically for anemia). This meant that the cause was in our case more than likely chromosomal.  She explained that moving forward we needed to make choices concerning weather or not we would deliver pre-term to be given the chance to have a live birth or going full term risking still birth (though this could happen at any given point). She asked us for our questions and all though I had a list of 23 questions I felt like all of sudden they became irrelevant.  

Levi encouraged me to ask anyway.  One question that I had received a devastating response. I asked if we could donate his organs. The answer was no! If it is in fact chromosomal. This really bothered me; I felt like if my baby wont make it maybe he could be the miracle for someone else. Even that opportunity is being robbed from him.  

She left the room for a moment. I wrapped my arms around Levi and we just cried. I said, “I’m sorry”. Levi responded “its not your fault”. However, I felt and sometimes feel like it is. I wonder that if Levi were married to someone else he wouldn’t have to go through this tragedy with me.  I feel like I’m the reason why our baby’s chromosomes failed to work, as they should. Logically I know it is silly but the truth is its how I honestly feel. That’s the funny thing about human emotions they aren’t easily rained in by logical thinking. 

The rest of the appointment was all a jumble of bad news after bad news.  Which then turned into Levi and I having to call family and tell them what we were able to take away from the appointment.  

Those same words that my doctor mentioned those 20 days ago raged through my mind like wild fire “fetal demise” now became my reality.  My child, my little boy is only given a 10% chance to survive to birth and even smaller chances to survive much after that.  My whole pregnancy changed in a matter of 20 days.  From planning a nursery theme, picking out baby clothes, searching for double strollers. To preparing to bury my little boy. 

Sharing the news with family was difficult. Many stayed quite, others tried to cling on the hope of that 10% chance of survival. I hate it when people suggest I focus on the positive, I feel like it doesn’t give me permission to grieve. As much as I want so badly to cling on to that hope at the end of the day I have to continue to make decisions that I never thought I would face. 

Levi went back to work that day. Which helped him, as he needed the distraction. I on the other hand needed to prepare for our holiday trip in park city. As I started to pack I knelt down on my closet floor and just cried. I don’t think I have ever cried so hard in my entire life. I felt like I couldn’t breathe and I would just die right there. But my sweet little girl came and wrapped her arms around my neck and held me as tight as she could. She patted my back and kissed my face. She put her hand on either side of my cheeks and looked at me and said “its okay mommy”. I was so grateful to have my sweet little girl there with me.     

Now my pregnancy is focused on monitoring his growth, trying to predict when he will pass. Asking ourselves if we want to risk a stillbirth or do a pre-term delivery just to get a small moment with him alive. I have to decide what care we will provide if he does make it to birth. We have to make funeral arrangements, select a casket and a head stone and a plot. I’m sure there is many more decisions we will be faced with that will be unexpected. 

I still pray for a miracle, however I may not get the miracle that I’m wishing for. I have to believe that no matter what happens God has a plan for our family and for my son. I thought I would be angry with God, I thought I would despise him from robbing my opportunity to Mother him on this earth. But I know that if my Son lives even a short life on this earth he is called for something great on the other side. He must be a special spirit and I’m lucky enough to carry him here to dress his spirit with a body. I don’t know what miracle we will receive but I know that no matter what we will have a miracle. He may be born into perfection, meant to touch our hearts just for a moment. He may be in the NICU for a time and fight for life with us on this earth.  I know that God is good and I know prayer is powerful. I believe that whatever happens God is aware of me and I believe and trust in the promise that I will get to see my little boy again. I will get to wrap my arms around him and raise him one day. That day may not come in this life but I know it will come.  

Levi and I decided to give him a name Stetson Wyatt Barker that way we and others who wish to, can pray for him by name.  This experience has been really hard. I wish I knew how to tell people what to say and do to help, but I really don’t know. I also know that it’s hard for anyone to know what to say. Right now we just ask for prayers as we continue this journey.