It’s probably pretty vain of me to post a picture of myself but I can promise you this picture represents a stage of my life I never want to do over again.
This was taken as I left my house to go to our first appointment with our Maternal Fetal Specialist Dr O. I had no idea what she would say. I knew there was a complication with how the twins were developing. I was 12 weeks along. I told my husband to stay home. She wasn’t going to shock me today, I reassured him that I was a big girl and could handle whatever she threw my way. I desperately wished I had encouraged him to go. The poor guy had no idea what I was driving into.
I had a sonogram the day before on a very advanced machine. It was supposed to be the best of the best and I had tons of pictures of the babies that the tech printed out for me to take home. My OB Dr. C decided to have a consult with Dr. O because her machine was very detailed and that would tell us exactly what was happening.
I remember the clinic room I sat in after arriving a few minutes early to my appointment. It faced the parking lot and I was enjoying myself just people watching. I sort of hoped to see a mom with twins walking through the parking lot to the massive doctor clinic. I had a good view and I remember seeing a huge Suburban trying to find a place to park. Ugh, I didn’t want to have to drive that thing around Wichita. Three kids meant a good size car and it was likely my husband would talk me into a Suburban. Mini vans don’t go down dirt roads he lectured me. Pickups aren’t big enough he said. My Explorer would be too small when the boys started to grow. Whatever, what does he know I thought? HE didn’t have to drive the thing everywhere.
Dr. O came in with her nurse practitioner after the nurse had taken my vitals and asked the usual questions. Dr. O smiled kindly at me and I joked about having a good people watching view from up here. She walked past the little scooter stool that most doctors sit on and settled herself in the chair next to me. The conversation started light. Typical questions about what I knew and what I didn’t understand yet.
“Did you come by yourself today?” Dr. O asked cautiously.
“Yes, I told my husband to stay home and I would bring any news back.” I said just as cautiously.
“Have they talked to you about Baby B?” She watched my reaction intensely.
“No…I know they have complications with the sac they are in.” I scrambled for any bit that would indicate what she meant. I could feel my heart starting to pound louder.
“Well, we have confirmed there is no membrane between the babies. They are mono-chrionic and mono-amniotic. The risks of cord entanglement are very high.” She went on to explain their umbilical cords are all jumbled together. The survival rate is 50% in this type of twins. The high risk complications for mono mono twins include cord entanglement, cord compression, twin-to-twin transfusion, and premature birth. As the babies really start to move their cords become twisted together and knotted in hundreds of different ways. This means that if one of them pulls to hard it will tighten their knots and cut off their blood supply. This would immediately kill them. I would have no indication that my babies were dying inside me. Even if only one of their cords was knotted the other would likely not make it after receiving twice the normal amount of blood resulting in brain damage and eventual death. Twin-to-twin transfusion means that one baby can get too much blood supply and one can’t get enough, if left unchecked can kill one baby and permanently disable or kill the other. Our babies were guaranteed a stay in the NICU as they recommended hospitalization from viability until birth at 32 weeks via c section.
“Viability? Like when they can live after birth by themselves?” My hand flew to my stomach in fear.
“Yes, if they make it to the age they can be born and still live, you will be admitted to the hospital for 8 weeks until we can deliver safely. That age is 24 weeks approximately.” Dr. O stopped for a second to let this sink in. I had an idea this would happen after finding out that we were having twins and something looked complicated. That meant I would stay by myself two hours away from home for 8 weeks. Two months away from my son, my husband, our new home and the rest of my friends and family sounded like such a long time. Who was I kidding? It WAS a long time. Two months??
“The babies probably will stay in the NICU for quite a while, as long as their due date.” Dr. O explained. After doing the math in my jumbled brain I realized that meant 4 months away from home. 2 months for me to be in the hospital and 2 months for the babies to be in the hospital. No, that wasn’t possible. I couldn’t handle that? Thats such a long time. I began to feel sick and it wasn’t just the morning sickness. I held it together. I could do that. Besides I had three months to get ready.
“They found something else on the sonogram though.” Dr. O started again. My heart dropped into my stomach. It was the tone. The tone that doctors use when they have bad news.It struck me like a baseball bat. Whatever she would say next was going to hurt.
“I’ll just get to the point because I don’t know how else to do this. Yesterday they noticed something on the back of Baby B’s head.” She handed me a printout of Center for Disease Control with a funny looking baby’s head on it. “It’s called an encephalocele.”She explained that Baby B’s is on the occipital lobe of his head. There is hole in his skull next to his brain and a cyst has developed over that hole. It is roughly the same size as his head. Generally, this means that his brain tissue will go through that hole and migrate into the encephalocele and he will develop particular disabilities with that tissue affected. The occipital lobe controls vision mostly. 20% of babies with this condition will make it to birth and of those only 20% will live past birth to have surgery.
I lost it. The floodgates opened and I tried to hold it in. It didn’t work. I sobbed for I don’t know how long. Dr. O handed me a tissue and hugged me. She comforted me best as she could. But I totally and completely sobbed my eyes out and my makeup off. My sweet babies weren’t going to live. There was no way! Even if the mono mono thing didn’t kill them the encephalocele would kill one of them and eventually affect the other. I am a believer in cold hard facts and the facts didn’t lie. These 12 week old babies inside me were doomed. They couldn’t come out of that.
“There is an option if we find that brain tissue is in the encephalocele. We can do an occlusion. They will go in during the early pregnancy and cut off Baby B’s cord. He will eventually die and it would save you the pain of carrying him further or watching him die at birth.You would have one healthy baby and a normal pregnancy after that.” My head shot up. Abortion? Is that what she meant? Kill one baby to save the other? Would I watch my baby die in a week or watch him die at birth if he even made it that far?
Now, Dr. O is obligated to give a mother options when this type of severe birth defect occurs. The reality of a disabled child is difficult but watching your baby die shortly after birth is painful or even if they die in the womb. The thought that any parent would have to watch their child die at birth is a soul-crushing one.
Judge me all you want, but I’m a pragmatic person. I like things I can control. I like order and plans and lists. Predictable is the name of the game for me. I organize things for fun. This is who I am. I fully considered killing one of my babies to save the other and save myself from the pain of losing one or both babies. There I said it. I’m serious. Judge me. Go ahead. I deserve every bit of it. The reality of this situation is that unless you have been in this situation you could never know how you would react. You DO NOT KNOW.
My tears stopped and I felt my body go numb. The kind of numb that Novacaine does to your mouth. The kind of numb that nerve damage causes. The kind where you can’t feel anything. Someone could have walked in that room and shot me. I wouldn’t have cared. Still to this day I can’t perfectly describe it. My soul left my body and I went through the rest of the appointment. I asked my questions. Saw the evidence on the sonograms that my baby had a serious birth defect. I satisfied my need to know everything.
It was caused by an amniotic band. The twins sucked so much folic acid out of my body that a piece of my uterus broke off the lining and stuck to my child’s head. It created a small hole in his cranium and a cyst on the outside. Usually, when an amniotic band attaches to something it has the capacity to completely cut off the blood flow to the affected area. Think about that. Whatever those fibrous strings of uterus stick to it can permanently damage. Lands on a finger, no more finger. Lands on a leg, no more leg. Lands on a specific spot on the head, nothing develops there. What were the chances my precious child would escape permanent damage?
I took their phamplets and sono pictures. I walked numbly out to my car in the parking lot. I turned on the car and started blasting my air conditioner. I need to feel something that would calm me and bring me back to reality. I had to drive and be able to focus on the task at hand. An incoming call flashed GAVIN and I sighed. Wanting to let it go to voicemail, I answered it.
“Well, whats the news?” Gavin asked as innocently as he could.
I held it in. Before I broke down again I explained sufficiently the situation. Then I told him about the occlusion. We would lose one of our precious babies for sure if we took that route.
“What kind of an option is that? Why would we do that?” Gavin wasn’t having any of it.
“Honey, this sort of disability most likely requires frequent doctor visits and a special school. We’ve got to be able to care for our child and if that means moving, then its what we have to do.”
“We will cross that bridge when we come to it. I’m so sorry you had to hear this by yourself. Do you need someone to drive you home?” Gavin knew how I could get worked up and this was the worst kind of mood for me to drive in.
“You know, I’m going to the bookstore, maybe the library. I’ve got to do some research on this. I won’t drive until I can handle it. Don’t worry.” I had sobbed my eyes out all before 11:00 am. There wasn’t much emotion left in me.
I’m nothing if not a hider. I’m fine. I’ll be ok. I don’t need anyone to fuss over me or come to my rescue. I don’t need rescued, I told myself. Least of all disrupt someone else’s day with my bad news and inability to handle myself like a grown up.
We hung up and I put my car in gear. I found my favorite bookstore. The one with the big cushy chairs and adjacent coffee bar. I could see coffee would be a very bad idea at this point so I opted for tea. I walked among aisles and aisles of books, searching for anything that would help me. I found two medical reference books. Both were the size of a shoebox and had two sentences describing an “encephalocele”. The words “Birth Defect” kept flashing in front of me. Its all I could see, a giant lumpy looking cyst attached to my unborn baby’s head. He wouldn’t look normal. In some cases even cosmetic surgery can’t correct the malformation, and he would have that stigma for his lifetime. I really could care less how his head looked if he could just not be blind. I begged God for that the most. Please let him see Your creation. Don’t shut him out of the beauty the world can behold. Don’t tell me that my baby will never see how much he looks like his brother. Don’t let my baby miss out on Kansas sunsets, newborn calves, first sprouts of corn, blue skies, and most of all seeing his accomplishments. What good are accomplishments when you can’t enjoy them?
I snapped those books shut. Obviously, this wasn’t the place to find information. I shoved the book back and practically ran out of the store, trashing my tea on the way. Past the books that help parents deal with the diagnosis of their children, past self help books, past action or mystery novels that would take my mind off my situation. I needed to go home. I needed to hold my 18 month old son and feel normal for five minutes without this crushing weight on my chest.
The drive home was the worst. Thankfully, I had run out of tears and was simply driving with moist eyes and a numb body.
I clicked my driving playlist. Some random music that I could sing along to and relax to. A couple songs came on that have always spoken to my soul.
“Forever” by Kari Jobe
“Oceans” by Hillsong United
“Lord, I Need You” by Matt Maher
I wasn’t feeling very close to God at these particular moments. He felt a million miles away. But every one of these songs spoke to me in a way I hadn’t been ministered to. I felt their convictions deep in my soul and my heart ached from Him reaching out to hold it. He held my heart in His hand and I was terrified He was going to crush it. I should have known better but I ignored it. I was feeling betrayed and wasn’t done pitying my situation yet. He offered peace and I counter offered control. Give me control and fix my baby, God. I’ll follow you then. Tell me at that next appointment that I don’t have to worry anymore.
He declined my offer. Thats not what He wanted from me.
I cried to my mom everything that happened. She held me and we cried together. At this point it was a miracle there were tears left in my body. My spirit was so totally broken. I knew 12 weeks was technically past the largest percentage of miscarriages, but there was nothing to keep my babies alive. One wrong move and they would die, slowly at first, stripping them of their blood supply and damaging their organs beyond repair, then they would pass away. I would have no idea why or when. The only indicator was movement and at this stage of pregnancy I wasn’t feeling any, I had nothing to reassure me.
On top of that one of my babies wouldn’t likely live. I had to let them know my final decision about abortion quickly. I told them in the office that it wasn’t an option for me, but they told me I had four weeks to think it over and see what the sonogram showed. If there was brain matter there was a certainty of some sort of permanent disability, most likely vision related because of the location of the defect.
I went over and over it out loud with my mom. How could this have happened? What did I do wrong during this pregnancy? Why would God ask me to suffer this? Hadn’t I been studying my Bible lately? I had a wonderful support group of fellow Christian moms who met weekly to discuss God oriented parenting. They gave me strength and courage to raise my son right. What else was He asking for in my life?
Gavin came home and we discussed it at length. He was just as devastated as I was. I was simply thinking of my tiny baby not being able to function. He was thinking of his child never knowing the joys of life. We agreed that under no circumstances would we consider abortion. We weren’t sure of what was ahead but that was not an option. God had given us this baby and we would see it through until He called our sweet baby home.
We prayed for a good hour about what would be required from us. I remember crying during most of that. We prayed most of all that God’s will be the path we chose. We knew He asked something difficult and wanted His all encompassing peace to fill our lives. I don’t know how, but I fell asleep that night. The most restful sleep I had felt in a while.