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Lauren's Story
""I am not afraid," I said to the video camera..."
Reassuring my husband that I loved him and that it didn't matter if he went into the operating room with me. I have the doctors and the nurses I have come to know, and that anesthesiologist who I wonder if he might actually be stoned right this very moment. I do not need you to be there with me and to be grossed out by the c-section, I need you to be solid and happy to see me in recovery. I need you to be there when they take the baby potentially to the NICU, so that you can videotape them weighing her; so that I won't miss a second. I expected a healthy baby daughter. Our baby girl was supposed to weigh a little more than 4 lbs, and she was 37 weeks. Small, but healthy. We had endured a lot during the pregnancy, I had tested positive for an antibody at the beginning of the pregnancy. We knew that antibody could cross the placenta and that it could cause problems if it did. But we understood that our biggest enemy was premature birth, that if they could bring her to full term that she would be all right.
The moment they took her from my belly I knew that things didn't seem quite right. I couldn't put my finger on the fact, that I never heard her cry. I never heard her cry, ever. They took her to another room, and the sweet anesthesiologist who talked at my head the whole surgery reassured me that this was not such an uncommon occurrence with c-sections. A nurse returned to the operating room for something and doctor said assumptivly, "baby is perky". Nurse reported, "baby was intubated". I realize in this moment my baby is on an ventilator. I return to recovery where my sweet husband looks like he has been hit by a truck. He followed the team to the room where they were working on Lauren, they directed him down to recovery to wait for me there. Leave them to their work. They will come get us when she is stabilized. They eventually come to us and ask us for our consent to give her another blood transfusion. Why not, she has undergone 4 or so prior to her birth. We do not realize that this is our one and only moment to say no.
I ask the nurse if Lauren is going to survive. She said, "I don't know, I know she is one of the sickest babies in the NICU, but that this consent right now is her golden ticket." We sign and they leave us alone for another 90 minutes. Eventually, they take me from recovery to where my baby is waiting. We will baptize her in that moment. The first time I see my daughter, we are baptizing her because she may not live. She is dying. There is no moment where they hand her to me. The moment when I take her face in and I know that she is mine. There is, instead a moment when I look at her and I don't understand what went wrong. Why it is that I expected a healthy baby girl and instead I am looking at a dying neonate. Her skin is covered in red blotches, she has a wealth of black hair. She seems to have my nose. I can not see her mouth because a tube is down her throat and tape covers the better portion of her chin, mouth and upper lip. I make myself take pictures of that moment, of us as a family. Because I still hope that someday this moment will just be ancient history. That they will get her stabilized and that we will go home and be a family and we will look back at this horror as a moment that we were scared and made us stronger. We do not smile in the picture. They take me to my room.
Sometime during that night I ask them to take me back to see her again. I throw up when I see her a second time.
Later yet, I ask them to take me to her, again. I sit on a couch and fill out paperwork. I sign consents and give away my right as a parent to make decisions about her treatment. I believe in that moment that I am settling in for the long haul. Nurses don't speak to me about her condition. Only that she is critical.
In the morning I ask them to take me off the IV, and they do. I talk to a nurse who is caring for Lauren, and I ask her to give it to me straight. She said, "she is not circling the drain, anymore." She is critical but stable. What does that mean anyway, critical but stable?
On Sunday, I choose to check out of the hospital. I have been there little more than 2 days and I am ashamed that I am not able to just sit and stick it out with her for what I learn is going to be a very long time. But I feel useless next to her then unconscious body. I feel claustrophobic in the hospital and in her tiny room. I feel the need to get away as quickly as possible. The shame of my limitations is debilitating. The fear is suffocating, and the unknown is maddening.
I go home Sunday and on Monday receive a phone call that my daughter has a diagnosis of CMV. What is CMV I ask...CMV is Cytomegalovirus. The doctor issues little information on the phone indicating tht it most commonly causes hearing loss. She does not say, it is the number one cause of deafness, and cerebral palsy. She does not say it is the number two cause of mental retardation. She does not say it cases seizures, breathing difficulties, organ problems and death. Instead when probed, "Doctor, could my baby be brain damaged?" Doctor responds, "she could be." We hang up and I immediately WebMD CMV. I see all that she has left out and I call her back to say that I believe she has left a few details out. She has left out that this disease affects one in 150 births ranging in severity from mild to severe. Our baby was severely affected; and had it not been for the intrauterine blood transfusions she would have died in utero. Some babies are born with no physical symptoms, mine was born with many.
The doctors never do sit down with us to discuss our future. Instead left to our own devices, I rely on my perinatologist and nurse practioner from my pregnancy, my IVF doctors from Lauren's conception, my husband and I interview infection disease doctors across the country and read hundreds of journal articles. We use the methodology from research articles to try and make our own projections about our future. We try to understand what her life is going to be like, and what in turn this means for our healthy son and for ourselves. We are in shock, and we are scared. I awake every morning and throw up with the knowledge that I am on my own in the dark; that I can not fix her. When people tell me that God has a plan; I wonder how could that be. How could this be the plan? When people graciously pray for a miracle, I wonder what exact miracle are we hoping for? I question what "do no harm" means. I love her so and the knowledge that I can not help her is the single worst thing that has ever happened to me.
Our daughter did not come home. And the months following our loss have been difficult. It is difficult to make my face match my heart. That on the outside I look fine, and yet I can not locate things like the grocery store when I am in my car. They tell me this is a normal part of grief. That your brain doesn't work as well as it should or did. It is difficult that people move on and I never will. It is difficult to watch people become pregnant and to know that they are still not being screened for CMV at the doctors office. I think of Lauren every single day, sometimes most of the day. I pray that she is finally peaceful.
- Shared by her mother, Liz