I wish I hadn’t had the optional ultrasound at 20 weeks. Our midwife had given us the choice and we decided to find out if we were expecting a girl or a boy. Late in the afternoon a week later she called to tell me that there were some anomalies and that she was faxing our info to a specialist. First thing the next morning I received a call from the specialist’s office. Could I come in on Thursday? And so the fear began.
Week 22, we traveled an hour and a half to the specialist. Waiting room, consultation room, waiting in the consultation room, ultrasound room, waiting in the ultrasound room. Lady Doctor comes in red faced, upset. “It looks like it could be a chromosomal problem. She has rocker-bottom feet, a hole in her heart. She hasn’t swallowed any fluid lately, so we aren’t sure she can swallow. The skin on the back of her neck is thick, which is a sign of a chromosome issue. I don’t think she’ll make it to term.” Refused the offered amnio…I am carrying my baby.
Week 24, two weeks later, back at the specialist’s office. Different lady doctor this time. Other one doesn’t work there anymore. Fetal Echo, heart’s okay…hole is closing. Ultrasound, she is measuring a little small. Still refusing the amnio? Come back in 2 more weeks.
Week 26, back again. More ultrasound. More pictures of the baby’s face. Stop taking so many pictures. Tell us what you see now. Definitely small. Intrauterine Growth restriction. Might have to deliver her early if her placenta isn’t working properly. Amnio would help us know how to proceed. No amnio! I am carrying my baby. Come back next week. Bring your packed bag with you.
Week 27, she is still measuring really small, but she passed her test for today. After next week you’ll need to come twice a week.
Week 28, lady doctor on vacation. Ultrasound tech says, “Oh, we don’t want to see that. I am getting the doctor now. He’ll want to see this.” The blood flow is stopping between beats, ebbing and flowing like the ocean’s waves. She can’t survive this long. Let’s get you admitted, do you want to call anyone?
And there I was, sitting in a hospital room, alone. I had called my husband. He was on his way. He just had to take our 20month old son to my parent’s. I called my mom collect. I could barely give her the hospital’s number because my voice was stuck with the lump in my throat. I sat there alone and tried to sing a hymn I once knew, “Be still my soul, the Lord is on thy side. Bear patiently the cross of grief or pain…” It was too early. Her only chance was a three month stay in the NICU with machines doing my job.
There is a scheduled c-section at 12:30, we’ll go in after that… give dad time to get here. Fetal heartbeat dropping…no that is mom. It is not mom. Much too slow for baby, but there it has picked up. Let’s not wait…we’ll bump the scheduled section. “Why didn’t you have an amnio? If we knew it was a chromosome, then we could be less aggressive. You could still hold her and watch her breath, but since we don’t know I need to do a classical incision… the worst thing possible if it is a chromosome. *sigh*, but it is best for her.” Sign this paper. Drink this. Here we go. Nurses racing, pushing chair, doors swinging, cold, cold room. Lean over. Hug this pillow. Lay back. At least I don’t feel cold anymore.
I heard her cry. What a wonderful sound! More like a mewing kitten than a strong vital baby, but it was a cry! Then my husband gets shoved unknowing into an operating room, not the waiting room where he expected to see me sitting. Here. I am here. Do you see her. She is here? Yes, there. We have to take her to the NICU now. “Where are you vacationing this summer?” the doctor asks the nurse.
They took me in to see her once. They brought me pictures. They arranged for her to be transferred to a different hospital, better neonatal surgeon. The transfer team bought her in to see me, to show me that she was ready to travel, strapped in to a little five-point harness in the portable incubator on her way to an ambulance.
The next morning I received a call, they needed to operate. The problem wasn’t the block in the esophagus, but the connection below that between the esophagus and the trachea. She was swallowing air. Could a parent please come. So my husband rushed out the door. The nursing staff gave him a map. My parents came, they brought my son. I clung to him. We nursed. Another phone call… surgery went well.
The phone rang again, my distraught husband asking, “Do we let her go?” I asked to speak to a nurse. I couldn’t understand what was going on. Her oxygen levels were dropping, the air was going out the new stomach tube instead of into her lungs. They were trying another ventilator. Did we want them to resuscitate if…
The hospital released me. They thought she was gone or soon would be. My parents drove my son and I the 4 hours to the other hospital. I walked in though the large sunlit lobby. I rode the elevator and walked down the long, long hall and through the NICU. Where is my baby? Where is my husband? Why isn’t he here with her? I walked and walked and walked…32 hours after surgery.
Four days later we got the genetic test results. We held her as we let her go.
When I had the staples taken out a week after the surgery, and three days after my daughter’s passing, the visiting doctor who had performed the c-section told me that “virtually every doctor will insist on a RCS due to the classical scar.” I heard that to mean that it was the doctors and not the scar that would be the issue.
A month later the midwife who delivered my first son told me that yes, I’d have to have c-sections from now on and that the practice that she works for will not be able to give me prenatal care due to the scar.
I have spent much the time since that day researching VBASSC because it was the only thing I could DO. We want a few more children and the physical risks involved with a few more surgeries are not something I want to put my family through. In addition, I chose to do everything in my power to avoid being wheeled into another operating room, or having to walk into another NICU. And the single biggest thing I can do to that end is to not schedule a repeat section.
