Good Grief

In case you don't know, the grieving process goes something like this: Denial, anger, bargaining, depression, acceptance. Over the course of the days since my ultrasound, I had gone through this process. The one thing that I noticed in going through these steps was that I completely skipped the stage of anger.

I have never been known to be an angry person, but I am aware that anger is common among people who do not understand God's plan for their lives. I thought I'd become angry as a healthy step of the grieving process, but it just never happened. Maybe it's because I refuse to blame myself, or God, or mankind. If there's no one to blame, there can't be anyone to be angry with; can there? This made sense to me as a reason to not be angry, but I later realized it wasn't the only reason.

The real, true reason I had for going straight from denial to bargaining, and completely skipping the stage of anger was simply this: I had people praying for me to be strong. I had people praying the acceptance into me. I knew that I had a long road ahead of me; one filled with suffering, stress, anguish and fear. But also filled with strength, love, joy and peace. I knew I'd be going through that grieving process over and over again, but I also knew that I would always, no matter what, skip right over the stage of anger.

Four More Days

While at work on Monday, I had received a phone call from a nurse practicioner at the MFM clinic. She was calling to schedule me for my fetal MRI and fetal echocardiogram. I was happy to know that there was a time slot available that coming Friday; that meant I only had to wait four more days before I'd have more concrete information of my son's abnormalities. I knew that every minute between the time she called and Friday morning was going to be riddled with worry. Needless to say I accepted the appointment time she offered me.

During my conversation with the nurse, she informed me that she still didn't have the results of my amnio and she assured that the clinic would call me as soon as they had them in. She also told me that I would receive a phone call from the radiologist who read my fetal MRI images the same day that the procedure was performed. I was thankful that I wouldn't have to wait until the report was finished, as that would take several days. The nurse said there would be a pediatric cardiologist to give me the results of my fetal echo within 10 minutes of completing the study. At least this was some good news for me as I was in such a need.

That afternoon, as I drove home from work, I called my husband to tell him about the scheduled appointments and I called my mom to see if she would go with me on Friday. She agreed to go with me and I suddenly began to feel a change in myself. I began to feel an understanding of this situation; a process that was about to begin.

When you learn that your unborn child has problems with his development, you grieve. Your mind goes crazy while trying to imagine what the outcome will be like. You wonder if he will die before he is born. You wonder if he will die in the first days of life. You wonder if you can handle him and his needs if he somehow survives outside the womb. You wonder what he will be like, and whether he'll be able to truly know you; whether you'll be able to truly know him.

At this point I had absolutely no idea what life had in store for me. The doctor had only told me of the suspected problems as he had no idea of the extent of those problems or what they meant for Caleb. I didn't know whether I should prepare myself to deal with a stillbirth, infantile death, or to be the mother of a handicapped child. I was overwhelmed with grief, guilt and fear. I wondered why this was happening to Caleb; to my family.

Was this all my fault? I have never been one to believe in blame. I have always felt that blame serves no purpose but to make people feel guilty. Humanity spends entirely too much time pointing fingers and not enough time figuring out how to fix the problem. But I suddenly began to have feelings of guilt. My body had somehow maimed my son.

Back to Work

Because of the many prayers that were being said on our behalf, I managed to drag myself out of bed on Monday and go back to work. It took me what felt like an eternity to get my daughter ready and take her to daycare before making my way to the office. Upon my arrival at work, I realized how much I didn't want to be there. I imagined just turning around and going home, but I knew that I must not neglect my responsibilities, and I had to tell my coworkers about my situation. Again, if no one knew what was going on, no one would pray.

As soon as I entered the office, I felt like I was going to cry. I made a point of not speaking to anyone, which was a dead giveaway that something was wrong since I am one of the most chatty people in our office. Two people asked if I was okay and I choked back the tears. I told them "no" and said I couldn't talk about it. I knew I had to break the news before they began to think I was crazy and tell me to go home.

I pulled aside my boss and asked her if I could speak to her in private. She immediately assumed a look of worry. The minute I opened my mouth to begin my story, I cracked and burst into tears. I uttered the words "there's something wrong with the baby's brain" and she didn't hesitate to wrap her arms around me and tell me how sorry she was. This is a woman who I've known for several years. She and my other coworkers all have a relationship with each other. We are all female and most of us are mothers. We are all nosey and get into each others' business, but at the same time, it is because we care about one another. I knew she truly felt my grief and I was comforted in the fact that I could count on her to understand my situation and be as accommodating as possible.

Shortly after I broke the news to my boss, I shared my situation with the rest of my office. I was touched by the fact that not only did these women care about my situation, but four of them actually cried when I told them about what I was going through. I was approached by each one of them coming to embrace me and share their comfort. Many of them offered to pray for us. What more could I hope for?

Coping With Personal Disaster

Let me just tell you, in case you don't already know, what it's like to truly feel yourself falling apart: You don't want to sleep but are exhausted. Your heart feels like melting wax. You just want to get to tomorrow, even if there's nothing to look forward to. You feel like you can laugh when something strikes you as funny, and yet you know that you could crack and end up bawling while you are mid-chuckle. You feel like you can't put sentences together so you can't really say what you mean. You wonder how any of this will ever get better.

This sums up my weekend of waiting. My husband and I felt it was finally time to share this dismal news with our large families. Considering that the two of us combined have a total of fifteen siblings, not including their spouses, this was going to prove difficult and filled with emotion. I knew that as tough as it was, we needed everyone to understand the situation.

Throughout the weekend and into Monday, I had witnessed many different reactions to our news. I saw fear, denial, curiousity, hope, pity, sympathy, and many more. But the one reaction that I longed for and didn't find was empathy. In order to truly experience and convey empathy, a person must first go through the same situation as another. I knew people who had children with special needs, and I knew people who had received bad news regarding the health of their child in-utero. I didn't, however, know anyone who could honestly relate in every way to what I was going through. I searched the internet for information on resources and support for families in our situation, but to no avail. I looked for books that had been written by someone who knew what I was going through, but I couldn't find them. And even though I had plenty of people around me who cared about me and Caleb, at times I felt utterly alone.

Let me just say that when people tell you that they know "someone" who's friend or relative was faced with a menacing fetal diagnosis and their baby turned out "just fine", that does not help a grieving mother one bit. The reason for that is simply that my child is unique as is every other child on earth. God chooses certain people to bless in different ways than others. God chooses to perform miracles on some people, and others are simply meant to be the way they are. My son is who he is. I love him no matter what is "medically wrong" with him. If the Lord chooses to perform a miracle on Caleb, that is wonderful. But I need to be ready to face the reality of whatever lies ahead of me. Believing in the miracle that happened to someone else's child does not give me hope for mine. My hope is in God's will.

As difficult as it was to accept this situation, I was able to overcome the grieving process. I am so thankful that we have the prayers of so many. I asked my family and friends to spread the word about Caleb because if no one knows, no one will pray. I asked God for the strength to accept His will and the guidance to turn to the right medical providers and support groups. I do not ask God for a miracle, because He has already given me one...my son's life.

All of this grief took place over the weekend of Palm Sunday; how appropriate a time. I can honestly say that I could feel the strength of all the people praying for us. I did have difficulty sleeping and functioning, and I did shed plenty of tears, but I knew in my heart that God was holding me and comforting me in His Holy embrace. I somehow managed to let the news settle in me and I knew that I had to pull myself together for the sake of my 3-year-old daughter. She still needed me to be her mother and I simply could not let myself slip into a deep pit of depression. She was one of the elements that forced me to bundle up my feelings and get on with my life.

This Can't Be Happening to Me

What the doctor was about to tell me was certain to derail my life. I quickly pulled myself emotionally out of my mind, and tried my best to listen objectively and carefully. I was amazed that I was able to have an intelligent conversation about such a profound situation that would ultimately break me down.

I put on my stone face as I listened to the doctor tell me that my child did not, in fact, have a choroid plexus cyst. Rather, Caleb had a cyst next to his choroid plexus and it was much more "significant" than that minor cyst we had suspected. Now, the word "significant" can mean many things, but I knew that when used in medical terms like this, it mean "big, not good, dangerous, you are totally screwed."

In addition to the "significant cyst" the doctor noted several other abnormalities of the brain. He explained that the corpus collosum, which acts as a highway to pass information between the 2 hemispheres of the brain, appeared to be developing abnormally. He also told us that the left frontal lobe appeared to be developing abnormally as well. In addition to this semi truck of despair, the doctor gave us one thread of hope; after a thorough exam of the heart, it appeared to be normal. On this day, good news seemed hard to come by.

Needless to say, we were in shock. We had not anticipated such terrifying news. The doctor assured us that his team would try as best they could to give us a diagnosis and an accurate prognosis, but he explained that brain abnormalities are extremely difficult to judge. Many people with problems in these parts of the brain experience a wide range of symptoms. He explained to us that he felt it necessary to get more information on these abnormalities and then he could better explain the situation and the possible outcomes. He recommended that I have an amniocentesis, a fetal echocardiogram, and a fetal MRI in order to get the most information possible. I agreed to have all three of these procedures out of a desperate need to understand what to prepare myself for.

I didn't realize that they meant the amnio would be immediate, and before I knew it, I was approached with a clipboard and instructed to sign my consent to this procedure. It was all happening so fast. In marched the team of an assistant, the technician, a nurse practitioner, the doctor and his resident. With all of them squished in my tiny exam room, they began setting up viles, preparing a needle, applying iodine to my belly, and finally, performing another ultrasound in order to properly insert the needle.

My head was spinning. I told the doctor that I don't do well with needles and I looked up at the screen as he inserted it just below my navel. I couldn't believe that I could actually see the needletip poking through the uterine wall on the screen. I layed perfectly still as they drew vile after vile of fluid from poor Caleb's dreaming pond.

When they had completed the procedure and cleaned me up, the doctor went over the signs of complications to amnio. He rattled off the list as a stared into space, now concerned not only for Caleb's quality of life, but also for his potential loss of life due to my decision to have the amnio. I knew that I needed to have it, but at the same time, I felt like I added insult to injury.

I was discharged from the office with instructions to call the hotline if I noticed any of the warning signs they had listed. On Monday, I was to receive a call from a nurse who would set up my fetal MRI and fetal echo. Being that it was just 5pm on Friday, I knew it was going to be a long weekend of worry.

My Heart Broke on a Friday

There we were; my husband and I. Waiting to begin my Level 2 ultrasound at a Maternal Fetal Medicine Clinic at Rush University Medical Center in Chicago. My husband's optimism was almost getting on my nerves. He was arguing with me while we waited for the technician. He insisted that our son, Caleb, had this minor, choroid plexus cyst and that it wouldn't be a problem for him. I argued back that he shouldn't be so set on that outcome until he has more reason to expect it. I guess we all cope with stress in different ways.

Finally, the technician came in and began the ultrasound. We smiled as we got to see him, once again, bouncing around in his own private pond. He didn't want to stay still this time either. It seemed like every time the technician got him in a good position, he'd move before she could take a measurement!

She was able to go over all the parts of his body and confirm that his bone density was good, as well as his proportions and major organs. And then she came to the brain. I could see the same black mass on the screen that we had seen in our first ultrasound. I also noticed that she didn't pretend not to be measuring it as she knew we were already aware of it's presence.

After the technician completed the exam, she called in the Maternal Fetal Medicine (MFM) specialist to go over the findings. When the doctor entered the room with his resident, he stated that he needed to go over the brain once again since the technician noticed something that she felt he needed to see himself. The doctor looked at the head from several angles and was having a difficult time because Caleb continued to dance his Irish jig. He decided to take a break from looking at the brain and to get a look at the heart.

Again, the technician and doctor spent a lengthy amount of time studying the heart. I was beginning to panic. The heart? No one ever said anything about abnormalities of the heart! I watched his face as he stared at the screen; desperately trying to read his expression, but to no avail. I only knew that he was aware of something that I wasn't.

The doctor determined that in order to get the view of the brain that would be most useful, they would have to do a vaginal ultrasound. Apparently, Caleb decided he wanted to bury his head in my pelvis for a while in an attempt to hide from the doctor. After I agreed, they began the ultrasound once again and I saw exactly what they had been trying to get a look at the whole time. My son had a large black mass in the middle of his brain. I was alarmed as they measured it and discussed what they were looking at with each other.

When the exam was complete, the doctor finally explained to us what he had seen. I remember hearing the words at the beginning of his speech, "What I'm about to tell you won't be easy to hear..." and that is when I knew, without a doubt, that my life was about to change.

In the Beginning...

Over Thanksgiving weekend in 2009 my husband and I learned that our trying had paid off and we were to expect our 2nd child. We were so excited that it was hard not to tell our families, as we wanted to wait until I had seen my midwife so she could confirm the pregnancy and give us a due date. We wanted to be at least 8 weeks along before we shared our news.

We ended up telling everyone during Christmas, and we were happy to learn that my sister and sister-in-law were both expecting as well. It was a joyous time for the family; to expect 3 new grandbabies/cousins all within 7 weeks time! My sister and sister-in-law were delighted that we could share in eachother's experiences. Pregnancy is often easier on you when you have other women to join you in the process of awaiting a baby. No one understands the difficulties of pregnancy better than someone who is currently going through it.

The first few months of pregnancy proved difficult for me; with nausea, exhaustion and hormone headaches. Not only did I have to get through these common pregnany symptoms, but I also had the added stress and worry that I would miscarry as I had once before. Though I knew this apprehension was irrational, I couldn't shake it and I spent many nights lying in bed, praying that God would let me have this baby. I began praying for my sisters who were pregnant as well; asking God to protect all pregnant women and their babies. My fears never disappeared, but they did subside as I reached my 2nd trimester and heard the baby's heartbeat for the first time.

Weeks and weeks had gone by, and with me having the latest due date, I was also the last one to have my regular 20-week ultrasound. My sister was eager to announce that they were having a boy! Several weeks later, my brother called with the news that they were having a girl! How thrilling all of this was for us. We became even more anxious to have our ultrasound and find out whether we would have another girl or our first son.

Finally, the day had come when I was 19 weeks and 5 days pregnant. We went in to our local hospital for our ultrasound and we discovered we were having a boy! We were so happy as we watched the ultrasound moniter. The technician pointed all the organs out to us and let us know the measurements of the baby. We got to see his tiny heart beat and watch him jump around in my womb; putting on a show for mommy and daddy. It is such a comforting feeling to see that your baby has all of his limbs and is measuring a normal size for that week in gestation. We were finally at ease as the technician moved to the last area of the body, the head and brain.

We were watching the screen as the technician measured the head circumference. I grew antsy since she seemed to be spending a lot of time on this particular view. I guess she could tell that I was bothered because she asked if I was doing okay and assured me that she just needed a particular view and he was moving too much to capture the still frame she needed. I watched her expression as she repeatedly leaned in toward her moniter and back upright again. I knew that the baby wasn't moving and that was not the reason she was studying the brain so closely. I felt in my heart that there was something more she wasn't telling us, and I knew I couldn't ask her about it because they are not allowed to discuss results with the patients.

After several minutes, the technician called in her supervisor to have her see if she could "get the view they needed." We waited as the other technician studied the brain and I noticed the same expression on her face that I saw on the first technician. I just knew that they were looking at something they didn't want to tell us about.

I was grateful that I had a prenatal appointment the next day. I knew that my midwife would certainly tell me anything she knew about the ultrasound report. She performed her routine exam and I told her of my ultrasound experience. She said she hadn't received the report yet, but she'd see if they would fax it over so she could put me at ease. She went to her office to get it and I sat alone in the exam room for what seemed like an eternity.

When she returned, she showed me the paragraph in the report where the findings were listed. To my dismay, she delivered some news that failed to calm my fears. She explained that the technicians noted some asymmetry in the baby's head. This suggested a thing she called a "choroid plexus cyst" might be present in the brain. According to her knowledge of this type of cyst, they are usually found to be harmless and most of the time, they go away on their own. Then came the unnerving part; though they are usually harmeless, they are sometimes linked to trisome 18, which is a chromosome that if defected, usually results in fetal or neonatal death.

My heart sunk, but I somehow managed to deliver the news to my husband in a calm manner. He did some research online, and found that she was right in saying it is rare to see the cyst cause a problem. To our hope, only 1 in 300 babies with such a cyst actually has trisome 18. He assured me that we should hope for the best because there must be a positive result for us in the future. In the mean time, I was supposed to schedule a Level 2 ultrasound at Rush University Medical Center in Chicago so a Maternal Fetal Medicine specialist could have a look at a high-quality ultrasound and give me his input.

Luckily, we only had to wait 11 days from the first ultrasound to the Level 2. It was still nerve-racking, but we grew to have faith in God to handle our situation for the best. We decided not to tell our family members and friends about the cyst until we had more concrete knowledge of it. We decided instead to tell everyone of the good news...we were having a boy!