Part 2- Decisions of the Heart…
Our journey began with two simple words, uttered after years of painful tests and frustrating disappointments. In the cold of January 1996, we heard the words that would forever warm our hearts: “You’re Pregnant”. We were ecstatic, thrilled beyond words, and to top it off there was no need for my surgery! We decided to tell everyone we knew! We called family and friends to share our joy. We were barely 5 weeks pregnant and we knew everyone believed it to be bad luck to tell before the second trimester, but we had already learned that we loved this new little one and even if something happened to him or her we knew that life was meant to be celebrated.. The time for joy is HERE AND NOW! Joy can be fleeting and life was meant for you to take a bite out of! So we didn’t hold back we shared our news and lived in the light of joy when we could.
During the first few weeks of my pregnancy I battled extreme nausea. I often stopped in the midst of a lecture, at the college I was teaching at, to throw up in a wastebasket I kept right outside the door. I lost weight, but existed on sheer joy. Nothing was going to rob me of the excitement I felt for this precious new life. When I went in for my first official OB visit, I was 7 weeks pregnant. I told my doctor the things I had been feeling and she took blood and examined me. I could see the concern on her face when she pressed on my stomach and I shot off the table in pain. She explained that I should not be so sick. I shouldn’t have that much pain and I had a slight fever as well. We waited in the clinic until my white blood cell count came back..it was elevated. This was a rare doctor’s visit that Todd wasn’t able to come to, so I ended up calling him from the clinic to tell him to meet me at the hospital I was going in for an emergency appendectomy. The doctors believed that I had appendicitis. As they prepped me for surgery they explained that because I was so newly pregnant, they didn’t know how the baby would handle the anesthesia. They told me that they would do an ultrasound soon after surgery and watch. The baby may be still, but slowly begin to move again a few hours or a day after, or the baby may not ever move again. They couldn’t predict if it would terminate the pregnancy. I begged not to have the surgery. I couldn’t lose this little one. I remember holding Todd’s hand as they rushed me down the hall to surgery, “I was crying and telling him ‘I don’t have appendicitis! I don’t want to have this surgery, nothing can happen to this baby”. However, everyone was more worried about my health and the risk of a rupture than they were about our little one.
By the next morning we learned I was right, I didn’t have appendicitis. When they got to the appendix, during surgery, and discovered it to be healthy and pink they did an exploratory of my abdomen that showed nothing. It wasn’t until I got out of surgery and got the rest of my labs back that we learned: I had acute pancreatitis. But our first views on ultrasound showed a squirming little fetus with a strong heartbeat. I no longer cared what was wrong with me, my little one was still healthy and strong. My joy runneth over.
I returned to teaching full time 6 weeks after surgery, but I was still having extreme nausea, stomach pain and reflux. They were treating the pancreatitis with pain meds and hope. I was trying hard to keep anything down so that the baby would grow and thrive. My list of doctor’s had grown to include a GI specialist and a general surgeon. My weekly ‘dance card’ of visits included a weekly ultrasound, all of which kept me busy as I tried to work full time and continue my master’s classes in Medical Education. But I was truly thrilled with the joy of discovery. Being pregnant was a dream I had waited so long for and each day was a journey into a world of wonder.
As I entered my 18th week of pregnancy my GI specialist decided that more tests needed to be done to understand why I was losing weight and in so much pain. I went in for an upper endoscopy with biopsies of my stomach and small intestines to see if they could learn more and help to better treat my symptoms. I refused any anesthesia for the test, because I was too afraid that I wouldn’t be as lucky this time with our beautiful little one. So I laid on the table wide awake as they pushed a tube the size of a garden hose down my throat. When the doctor got his first views of my stomach I could hear his intake of breath. I would later learn that my entire stomach and small intestine was covered in ulcers. The valve at the end of my stomach that is meant to regulate food into the small intestine was spasming shut and there was bile gushing into my stomach. There were many mysteries that were uncovered that day that wouldn’t be better understood for years to come. Here I was a healthy women in her mid-twenties whose body was shutting down. My stomach and small intestines were paralyzed. My gall bladder was full of sludge and my liver was starting to show problems and I still was battling the intense pain of acute pancreatitis. But my GI doctor took what he saw on this simple exam and held my hand and gave me hope. He told me we would take things one step at a time. We would try to address the immediate pain with some meds and I left that day feeling a renewed sense of vision. A kind and caring physician with a little time and words of compassion can truly impart healing by just giving the gift of grace.
So as Todd and I had our last test of the day, an ultrasound, before discharge we were feeling like we had direction and purpose. We felt there may be a chance that we could get on top of my pain and focus on the important part of the journey..bringing a new life into the world. The ultrasound showed a decrease in the amount of amniotic fluid that should be surrounding the baby. But they reassured us that I may just be a bit dehydrated from the surgery and I just needed to come in in a couple days to be rechecked.
We came back for our second ultrasound feeling invincible. The medicines they had started me on were helping a bit with the pain and I was 19 weeks pregnant. I was almost halfway to meeting our precious gift and we were full of excitement. The tech came in and started the ultrasound. She explained that they had ordered a ‘Level II’ ultrasound to get a better view of the baby. This type of ultrasound would allow them to view inside the baby and see their organs and be able to get a general assessment on its overall health. We loved watching our little one squirm all over on the screen. We were used to viewing the baby on a regular ultrasound weekly, but it was fun to be able to see inside to its organs. Part way through the test, the technician got very quiet. She quickly went and got a second technician. As they finished the ultrasound they asked us to wait. We were nervous but still deep in denial that anything could be wrong. So we were devastated when a Perinatologist came into the room and told us: “Your fetus doesn’t have kidneys. This condition is not compatible with life. We have scheduled you to go over to the hospital to have the pregnancy terminated.” We were stunned. How could this be possible? It felt like we had fallen into a vortex of horror. I began to weep and asked, “Is the baby dead?” “No”, the doctor replied, “However it is already in congestive heart failure. It won’t be long.”
“Is the baby in pain?” I asked, I was trying to process what was happening, while feeling an overwhelming sense of doom overtake me.
“We have no way of knowing if the baby is in pain. However my understanding is that the pregnancy is causing grave difficulties to your health. It Is best if we terminate this pregnancy and then we will schedule an appointment for you both with a Geneticist so you can learn the likelihood of having this occur in subsequent pregnancies.” He explained.
“If I am understanding you correctly, the only life our baby will have are these few precious days in utero. We have no interest in shortening the little life that she has left. I just spent the last few years working in pediatric oncology and I can assure you that if you told me that my 2 year old was dying of cancer and only had a few months left, I would never tell you to end it now because I can’t bear to watch him slowly die. I have no interest in taking away the time that my child has left. It took us years to have this baby. We were told we would never have children of our own. This pregnancy was a gift, we will enjoy every minute that we have and take things one day at a time. There is no way you know for certain what will happen next.”
“That is your choice, but it is a huge risk to your own health. I believe you are making a mistake. But after looking at the ultrasound, I don’t think it will go on for very long.” He told us. I pleaded with him..”Isn’t there anything that medicine can do in the time that is left, kidney transplant, inter-utero dialysis?” He simply said; “No”. I was so frustrated with his demeanor and lack of compassion. I told him, “If you refuse to even try I believe that medicine is failing us.” And he replied “Medicine hasn’t failed you, God did.” and walked out of the room. Todd and I moved in a trance, they shuffled us in to see the Geneticist, but neither of us were even ready to hear about the impact on subsequent pregnancies. We simply wanted to cry, grieve, call family members, and wrap ourselves into a ball. The one thing they did tell us; was that although it was very difficult to see in the ultrasound, because of the lack of amniotic fluid, they believed the baby to be a little girl.
We were at 20 weeks pregnant and the countdown of our baby’s life had begun. Each moment forward would mark another minute closer to her last moment on earth. That night I felt her kick for the very first time. In that instance I knew without a shadow of a doubt that we had made the right decision. We were her parents and it was our job to protect and shield her. The time we had left was a gift.