Lacie Ann

In 2001, my co-worker and friend L terminated her first pregnancy at 20 weeks due to severe birth defects; it was a little boy they named Dakota. I remember attending the funeral and staring in disbelief at the incredibly tiny coffin. Several months later, L became pregnant again. This time she went on to have a healthy little boy named Colby, who is now 3. She became pregnant again, and this time she and her husband opted to find out the baby's sex. They were overjoyed to discover they were having a little girl and they chose the name Lacie Ann.

Lacie was a beautiful, seemingly healthy baby. At about 7 months of age, L noticed that Lacie has a lazy eye. The pediatrician suggested that she see an opthamologist to discuss treatment. During the exam, he discovered that Lacie had cherry-red spots in her eye, which is a classic sign of Tay-Sachs Disease. He then sent Lacie to a specialist for a blood test. After an agonizing week of waiting, L was told that Lacie did indeed have TSD which is always fatal by the age of 5. If you want to read more about Tay-Sachs, go to www.ntsad.org.

As the months went by, Lacie's muscle tone deteriorated until she could no longer hold her own head up or roll over or wave. She had trouble eating her baby food because the muscles in her throat would not work properly. In September, she underwent surgery to have a feeding tube put in. At this time, L was able to get a nurse to come to the house 3 days a week, so that she could continue to work part-time; this was necessary because she holds the entire family's health insurance since her husband is self-employed. On Friday, Lacie took a turn for the worse when she developed pneumonia. She is on an antibiotic but she is still spiking a fever, and her vital signs are very poor. She is on oxygen continuously, and the nurse is not optimistic that she will recover. Even if she did recover, it would only be a matter of days before she came down with another infection. Children with TSD usually die because their hearts become too weak, or from pneumonia. Lacie is now at home, and the nurse is there 5 days a week. A Hospice nurse comes in each day and gives her a bit of morphine to keep her comfortable. No one can predict just how much longer Lacie might be with us, and L does not sleep at night. She lives in constant fear. She and her husband have a DNR order for Lacie so that she may die peacefully at home in the arms of her loving family.

I went to visit L and Lacie yesterday during my lunch hour. The site of this angelic little girl hooked up to numerous machines and fighting for every breath sliced my heart in two. As a Mom, I can only begin to imagine how much L's heart is breaking. Lacie made a few noises when I was there, and I said "Are you trying to talk to me?" Her grandmother said "I bet she is talking to Jesus."

I came home and hugged and kissed Ethan and told him how much I love him. I thanked God that he could cry and scream and keep me awake sometimes. I thanked God that he can spit up all over his nice clean clothes and do poopies at the most inopportune times. I thanked God that he could babble and eat and smile and laugh. Each day with our children is such a precious gift. L and Lacie have truly reminded me of that.

If you'd like to see pictures of this precious angel, you can go to www.lacieannwivellfund.org.

Please keep Lacie and her family in your prayers.