Our Lisa’s Death

Our identical twin girls, Amy and Lisa, were born in October. Lisa was gravely ill and died at the age of 6 months. This is the story of her death and some of Amy’s behavior that followed Lisa’s death.

Thursday, April 26. Lisa had a normal type night. I got up with her at 3 a.m., and at 6 a.m. she ate well – no vomiting, etc. Next thing I knew it was 8 a.m. and Amy was waking up. Lisa slept till 10 a.m. – I kept checking on her and she was OK. When Lisa awoke she only had about one ounce of milk – she was very small and ate small amounts frequently. Then about 11:30 Lisa got hungry again and this time drank 1-3⁄4 ounces, a huge amount for her. At most she was drinking 1 ounce at a time but I always put 2 ounces in the bottle so the milk was always there if she wanted it.

Lisa most often settled in her swing, but not this time. At 12:20 p.m. I heard a noise and went to her. Lisa looked OK but this sound kept coming – like a grunting sound but Lisa did not look like she was having difficulty. I began to return to the kitchen but turned right around and came back to the living room thinking, “No, something is wrong, I must pick up Lisa.” Lisa had at this time a scared look on her face. When I picked up Lisa out of her swing I knew there was something drastically wrong and Lisa was probably going to die this day. As I lifted Lisa from the swing, her body felt so limp. Lisa was looking scared and I was so scared. I could then see that this “noise” was with each breath and Lisa was having difficulty breathing. I started crying and kept telling Lisa how much I loved her. I called Dave at work immediately and left an emergency message to call home. Next I called the pediatrician and told him what was happening. We had known Lisa was going to die – we just didn’t know when. Was it going to be 5 weeks, 5 months, or 5 years? We had discussed at length with our pediatrician that we wanted Lisa’s life to be at home with her family there to love her and care for her. That we had done, and now on the day of her death we wanted the same. I suggested to the doctor that we stay home and maybe use some Tylenol if needed. We wanted an easy death for our Lisa. The doctor was in agreement. Dave rushed home and by the time he was home (about 10 minutes) Lisa’s color was much worse but the “sound” was less and I think she was beginning to become unconscious. I called one set of Lisa’s grandparents who live an hour away and they came right away.

By 1:00 Lisa’s skin was very mottled and she was unconscious. Her little eyes were no longer open – just 40 minutes after the first signs came. She was breathing without difficulty. We tried to explain to Brett, our 3-year-old, what was happening. We held Lisa all this time and also had Brett. Our family was on the davenport and loving Lisa. Amy was taking her afternoon nap, but woke up a few minutes before 2:00) and we held her on our laps. I was amazed because she usually slept till 4:00 but I think she knew something very important to her was happening – her twin was dying. Our whole family kept kissing Lisa and telling her we loved her and about 2:15 Dave and I agreed we had not seen Lisa take a breath since about 2:00. So that is when our Lisa died – in our arms and at our home with those who loved her close by.

…The days following were full of notifying people and having Lisa’s visitation and funeral. We were amazed when Amy saw Lisa in her casket. She stared and stared at Lisa and I think she knew this was a special event and a special person to her. I helped Amy give Lisa a kiss. The day after Lisa’s funeral when Amy got up, she very dramatically leaned toward Lisa’s crib. I knew that Amy knew where she wanted to go. We went over by her crib and Amy looked and surveyed Lisa’s crib looking in every corner for 5 minutes. It was just amazing to see a 6-month-old infant with that much concentration but I am sure it related to being a twin and looking for her twin who up to this time had been in that crib when she woke up. As Amy neared 1 year she had a word for “baby” and just loved seeing babies. By the time of the first anniversary of Lisa’s death Amy was saying “baby.” On Memorial Day, we were at Lisa’s grave. As Amy was lifted out of the car to go to Lisa’s grave, she ran to the grave saying “baby, baby.” I think Amy thought of Lisa as a baby (Lisa was only 6 lbs. at maximum) and she remains fascinated by babies. Now she continues to talk about Lisa and ask questions. We hope we can continue to help Amy understand this tremendous loss.

Barb
…When the twins were born, Lisa was diagnosed with asplenia syndrome and was cared for by her family at home. They knew that she would not survive infancy. Amy is now a college sophomore [and later became a doctor].