On July 26 of 2000, we took our first look at Miriam Ann as we had a routine ultrasound. She was sixteen weeks.
I remember being nervous even though I had no real evidence that anything was wrong. The technician said she wanted to bring something to our attention. She did not say exactly what was wrong other than the amount of fluid in the baby’s abdomen was abnormal. She sent us over to the doctor’s office where the doctor conferred that it was a worrisome situation. The doctor personally called us in from the packed waiting room to meet with her in her office and immediately sent us to a group of perinatal specialists for more conclusive work.
On the first visit there, the doctor said that we should do an amniocentesis on the baby to check the chromosomes and relieve fluid pressure. My husband John and I were unsure what to do. After considering the procedure for a few minutes alone between us, we decided to consent in the hope that it would help her. Initially, they thought that she was a boy due to the nature of the problem that she had.
During one of our early visits, one of the doctors stated that we should just terminate the pregnancy. We told her that we decided earlier that this was not going to be an option. She stated that we could call back if we changed our minds, and that we are just “emotional” now. This appalled us. For days we tried to process the news. Someone at my old church recommended that we contact a doctor who was deeply interested in preserving fetal life. Dr. Gene Pearce was so encouraging and allowed us to discuss the situation with him in order to confirm all that we knew. He recommended that I call Alexandra’s House, a completely new type of hospice organization that specializes in pregnancy crisis situations like ours.
I was up late one night around eleven o’clock and decided to call and expected to talk to a message machine. To my surprise, Patti Lewis, the home’s founder and house mother answered the phone and was so amazing and comforting to talk with. No one until then could really relate to me on such a personal level over such a shocking situation. I just remember hanging up the phone and feeling an exceptional peace that really helped soothe my deeply wounded heart. Someone heard me.
We had to make some fast decisions. How would we treat this pregnancy? Should we intervene and how far do we take our endeavors? How do we respect God and honor Him? Do we continue seeking out medical treatments until we exhaust the list of available doctors?
We met with Pastor Lee Hovel who knew our family well to explore these and other questions that quickly needed answers. We called other local perinatal specialists to find a second opinion. We collectively decided that we should try to help our baby until the risks outweigh the benefits. Pastor Lee suggested going through all the open doors until none are left.
We went back to the specialist group several times in order to recheck the situation, do more procedures, and, in time, find out that our baby was a girl. We also considered a risky experimental surgery, but found later that it could not have helped.
All at once, everything came to a halt. Her problems remained grave, she was not compatible with life, and it was likely that she would not survive until she was born. That truth was so hard to accept! In our minds, we had a tremendous faith in God, but we did not understand His will or His purpose. We realized from her condition that she would arrive and then leave us quickly, but no one could reveal how long we would have to wait. We could see that she was not improving and that her lungs were extremely small. Her body was under stress that endangered her life each day. She would not be able to breathe or cry on her own, and all of these problems made everything seem so impossible.
We observed her condition every week. We waited for a miracle, knowing that God could surely provide it.
Because of her situation within me, I felt every move. There was no fluid around her. She was very busy and active. I felt myself bonding with her and her personality during these frantic circumstances.
Thankfully, we felt God’s presence in help, understanding, encouragement, and support from friends and family. I had never before witnessed such an outpour of love and effort without any boundaries. They all helped us to try and cope with the situation which at this point was our best hope. I discovered that people were capable and willing to take on our painful situation, which helped to soften the hard reality as it hit. They helped us through prayers or meals, and taking care of our son, Hanavan, who was only 15 months old. I had to rest much of the remaining pregnancy, and I felt him gradually fade out of my day as I faded out of his. I missed being his mom. John had to take care of both of us and work to keep the household going. I felt his burden become tremendous as he labored on without my help for weeks.
Another thing that was important during this time: we sought the guidance of Dr. Barbara Thompson, a Christian counselor, in the hope that our marriage would be spared a complete upheaval. She helped us to take courage from all of the offers of help and to organize our schedule so that everyone could have an active role. It was hard for us to find clarity to do many of these simple things because everything was so fast paced and unpredictable.
The time from July twenty sixth to November fourth was intense. Every emotion I had was amplified tremendously. The pregnancy became even more difficult as my anxiety increased and my coping skills decreased. I had to rely on God more and more for the courage and strength to go on. I found that I often could not go out in public because everyone could see that I was pregnant and I could not escape talking about Miriam. I would often answer simple questions without disclosing the situation in order to prevent anguish for others. If I did say anything, people did not know how to react. Sometimes I just couldn’t go out at all because I feared losing control of my emotions.
In the moments that I could reflect on everything, I knew that God created her for us for a reason. One day we will know exactly what that was, but for now we would have to do whatever work that lies in front of us.
On October seventeenth, I started pre term labor. To give Miriam freedom to do what she was meant to do, the doctor and I agreed that I would only be on bed rest as much as necessary to remain comfortable. I was taking medication to control the anxiety and frequent contractions. Every hour weighed heavily on my heart as the contractions grew stronger.
Finally, the evening came where I woke up at twelve thirty a.m., and I could not sleep through the pain anymore. I was in week thirty three. We scrambled to drop Hanavan at my parents’ house and go to the hospital. I was frightened by the situation and violently sick to my stomach when we arrived.
The surroundings were chaotic. The staff rushed to prepare. I had to have an epidural and an amniocentesis before delivery. At this point, I longed to meet her. I wanted the waiting to be over. I desperately wanted her to be a part of my outer senses. As God said no to a miracle of healing, He answered all 4 of my specific prayers completely: she was born alive; she was born early so she would be less aware of her difficulties; she did not suffer for a long time after birth; and she was not born by c-section which would allow a quicker physical recovery for me.
Miriam was four pounds seven ounces. She tried to breathe in, but could not, and her struggle was brief. She seemed to quickly relax and did not make a sound. People were everywhere taking care of her and trying to help me recover from the traumatic birth that my body barely tolerated. John held her near me so that I could be with them both. Finally, after staying with us for 46 minutes, she gave in to all of her complications. John took pictures of her and baptized her with his tears. He went out to our family and cried out about how everything had happened.
The neonatal nurses bathed her, and dressed her. Even though she was no longer alive, she looked wonderful to us. We put some of her hair in her baby book. The nurses made tiny hand and foot prints and plaster molds of her hands and feet. They carried out all of our wishes for remembering her. All of our family members took turns holding her and we took pictures of them.
Everything seemed surreal. I had no energy to cry which felt odd to me. I don’t remember how many hours we spent in the room with her, but we were not pressured in any way, and the staff grieved with us and encouraged us. Later, I received encouraging notes from some of the nurses that conveyed how they were so moved to have been there with us.
We prepared for her funeral which was held a few days later. About fifty of our family members and friends came. To our surprise and amazement, the specialist who last worked with us in the office and in the hospital came. He had wisely told us earlier that we would not be prepared for the birth no matter how hard we tried. That was very true. After so much had already happened, the grieving had begun all over again.
Journeying away from that time more than seven years, I know that I am transformed. Everything about the experience defines who I am and continues to serve as a reminder of who God wants me to be. I find hope in knowing that I will one day be reunited with my daughter, and that I will once again delight in the gift that God allowed me to experience here on earth. I know that she has touched many lives and still continues to link people to God’s perfect will.