May 9, 1988
These are notes I wrote on paper that I planned on transferring to a permanent place. For some reason I feel it is extremely important to document Laura’s life and our experience. Time will bring a certain dulling of events, and that is fine, but I need some sort of semi-accurate record of that time.
October 11, 1987
There are so many things and feelings that I feel the need to record for my own self. Time has a way of erasing and dulling even very painful and acute feelings. For some reason I feel I should record things so that I will have some accurate record of what we went through.
The moment Laura was born and was tiny, I knew something was wrong. My nurses, my OB, the pediatrician, were all saying she was 2-4 weeks early. I knew she was 10 days late and it wasn’t until a week later, when the chromosome study came back, that the doctors could validate that all the characteristics that made her look premature were actually characteristics of her syndrome: Trisomy 18.
That first week is sort of a blur. We woke up, drove to the hospital, stayed all day, drove home. We went to the cafeteria and saw residents laughing at a table nearby. Mark commented that life still goes on for others while ours had come to a screeching halt.
Our feelings were so sad and bleak. At this point I wondered if life could ever be happy again. In retrospect that seems ridiculous, but at the time we couldn’t’ see any further than the next day.
Waiting for the chromosome study on Friday was frightening. We expected the geneticist to have an answer by then. He wouldn’t give us a clue as to what it might show. Again, in retrospect, we should have known it was a probability of chromosome abnormalities, since they were running the test. After assimilating this, I think maybe on Saturday I had accepted the fact that it was going to be bad news.
Saturday the doctor and resident met with us and told us the results of the study. The study wasn’t complete, but they were fairly sure of the diagnosis: an extra chromosome on the 18th pair — trisomy 18. Brain damage, heart defect, possibly lots of other things. The sun was pouring into the room, we were sitting there with them telling us our baby would die within six months; trying to figure a plan — surgery? what? I remember trying to hold back the tears so we could finish our conversation, decide on what course to take with this badly defective baby that had no hope for life; about the siblings involved, the surgery involved.
We decided on surgery for Monday morning. Hopefully we could control the heart failure and get her home. The neonatologist guide us in this effort. He felt if we could get her home and let our kids stimulate her, she could develop as much as was possible with her ability. That seemed like a reasonably practical and ethical course to take.
On Monday we held Laura most of the day in the parents’ room. We had a run-in with the cardiologist who questioned our “no code.” He didn’t even know the baby he was getting ready to operate on had trisomy 18 syndrome. He almost attacked us until I told him about all her problems. He backed down quickly and offered an apology.
I was a wreck.
We couldn’t believe so large a misunderstanding could have occurred. She made it off the ventilator Tuesday morning but started having real problems Tuesday afternoon. She was dying. We had to decide to re-ventilate her. The doctors made it very easy though, saying that after two days she would either live on her own or die.
I was glad for their decisiveness. I was afraid we might get into a situation where she would be kept alive indefinitely on a respirator. For the next two days I sat by her in intensive care. A beautiful 18 month old boy was beside her, in a coma, suspected child abuse.
On the other side was a beautiful 5 week old girl who had had heart surgery. As I stood over Laura on Thursday night, Dr. Ashcroft came by and told me “you can’t breathe for her, she has to do it on her own.” I cried as I looked at her and said, “I would if I could.”
We were able to hold her about 10 minutes each evening. It was a big ordeal to get some of the monitors off so we could hold her. Thursday morning I had told the kids he might die on Friday. I asked them, “Would you rather come home if you were Laura, or would you want to go to heaven and live with God?” Jonathan said he would rather go to heaven and live with God, Kathryn said she would want to come home. Thursday night Kathryn prayed, “Dear God, please let Laura come home and have good friends like I do.”
Friday morning was a beautiful day. As we drove to the hospital we were both ready for her to die when they took her off the respirator. The nurses, doctor, and technicians expected her to die then. They moved us into a room so we could be by ourselves. We took our tape, “A Mighty Fortress” by Steve Green and A Capella’s “Jesus Loves the Little Children.” Those words became so real: “Let goods and kindred go, this mortal life also.”
“Let his little child come in.”
We were holding our baby as her heart rate dropped and dropped. By late afternoon she was still alive. I asked the neonatologist to please assess our situation. The neonatologist, his resident, the heart surgeon and the nurse went out in the hall. They came back in and told us we could go home. All day were expecting her to die and I kept thinking of Kathryn’s sweet prayer. While I was at peace with her dying that day, I knew that Kathryn had begged God to let her come home.
They ordered portable oxygen and got us ready to go home. I’ve never been so happy. Even if she died on the way home that would be OK. A friend came to the hospital and drove home with us. Holly helped us out of the hospital. When we got home, we found Mark’s mom, Jay and Shelly and their kids, and our kids.
They were all on our bed wanting to hold her. Three huge oxygen tanks were bubbling in our bedroom. Saturday I called the Burkets, the Pryors, and the Thomassons. They all come over and held her. The Burkets brought 18 hamburgers. It was a party!
We were so happy. Saturday night we took her to Jim and Sandy’s for another party. Everyone was there — all the cousins. We knew this would be a one-time thing and we were glad for the opportunity. There was no reason to be nervous or afraid. We knew she was going to die.
Sunday, neighbors came over. I took my first nap in three weeks. A four-hour nap. That evening the Brackens came over. We were all dead tired. We sat on the bed and visited. Them with their healthy baby, our baby dying. Monday, Mark went to work. That evening he told the kids to hold her and tell her goodbye because she probably wouldn’t live that night.
She died about 2am Tuesday morning in my arms.
We called the funeral home and then waited about two hours for them to come. I read Catherine Marshall’s account of her husbands death. Mark listened to worship music. We talked about what we had been through and how it had ended. It was really a pleasant ending — no struggle for life. We were with her. I was so glad she didn’t die in the hospital.
Jonathan got up and wanted to go to school. It was his 2nd day of first grade. We had to go to the hospital and sign Laura’s birth certificate — how ironic. I had to get a Rhogam shot. No one at the doctor’s office even asked about the baby.
Then we made funeral arrangements.
As a 33-year old it seemed unreal making funeral arrangements. I did what I always said I wanted to do — got the cheapest casket. I couldn’t stand the thought of throwing away money to preserve a dead body. She wasn’t in that body anymore.
Tuesday evening Mark and I selected songs and Scriptures. We wanted every word to be exactly what we wanted. Words that would minister to us. The “protocol” of funerals seemed totally irrelevant. It was just for us and we wanted to do things exactly like we wanted them. Hymns and Scripture, that was all. No big black cars, we set up the chairs ourselves and had no tent to separate us from others.