Dawn, a loyal reader and responder wrote this essay that appeared in our local paper. I wanted to share it with the rest of you. Thank you Dawn.
Respect, not callousness, for at-risk babies
By DAWN MEISENHEIMER LEWIS
Special to The Star
“The name is Jillian Faith,” my husband said, letting me know we had a girl. I was handed my tiny baby as the nurse proclaimed, “She’s beautiful, perfect.”
Five months earlier I was not certain I’d hear “perfect.” My prenatal blood screen results showed a risk of Trisomy 18.
Fear sent me online where I learned an extra 18th chromosome would likely give her a malformed brain and failing organ systems. More than 90 percent of babies with Trisomy 18 die within one year.
After two ultrasounds, she looked healthy, but there were no guarantees. I wanted an amniocentesis test just in case. I’d plan a Cesarean section to see the baby alive or for care after birth.
The perinatologist said he would do amnio only to pressure me to avoid heroic measures for “that type of child.” I realized that if Trisomy 18 was verified, my baby’s life could be valued less by others. I chose not to undergo the test, but I still worried.
I found myself in a support group for families whose babies are affected by Trisomy 18. I learned that parents with a prenatal diagnosis could expect to be treated in one of two ways: with coldness or compassion. Many stories touched my heart, but two in particular show the difference a doctor can make.
Christian was diagnosed with Trisomy 18 by amnio. The parents were immediately encouraged to terminate after an initial ultrasound.
After the diagnosis they were denied any further tests. The family was told they were “choosing when not if” their baby would die and were informed that “doctors don’t help babies with Trisomy 18, because they are incompatible with life.”
Early on, Christian’s parents were instructed to call when the baby stopped moving in the womb. Week after week, Christian kept moving.
He was alive when measurements showed too much amniotic fluid. He was alive when the induction began and when he was in breech position. Christian’s parents wanted a C-section in hopes of seeing their seventh child born alive but were denied monitoring or a C-section during labor.
Christian was stillborn with a cord tightly wrapped around his neck. The death certificate lists Trisomy 18 as the cause. Christian’s mother carries grief from the loss of her child and anxiety from the medical care. She believes that her son may have been born alive if he had been monitored during childbirth and blames herself for not demanding a C-section.
A different case was Teodora’s. She was also diagnosed with Trisomy 18 at mid-pregnancy. She was her parents’ first child. They decided to carry her to term.
Teodora’s mother visited two doctors before finding Michael Berman, an obstetrician and Yale University professor. Teodora was monitored closely in pregnancy, and born at 39½ weeks by C-section. She lived for more than two hours.
The medical staff went a long way to help the parents honor their daughter in life and in death.
Here is an excerpt from a letter read by Berman at the memorial service for Teodora. His words speak about the respect for Teodora’s life despite her supposed “poor quality of life.”
“As physicians it is the greatest professional privilege to participate in the care of a pregnancy and the birth of a child. Yet the bar is raised when the child dies. As elation turns to grief, and joy to sorrow; when in a brief moment the expected becomes the unexpected, this privilege becomes sacred. For we are first to see and touch her, we inscribe her image indelibly in our minds, and her death, in paradox, does not sear our bonds of caring but rather seals them.”
I think Berman picked the better way. His actions showed his value of a child’s life, even in death.
Dawn Meisenheimer Lewis, a former teacher, lives in Gardner with her husband and six children. To reach Midwest Voices columnists, send e-mail to firstname.lastname@example.org.