Aug 11, 2002
By Cynthia T. Pegram
/ The News & Advance
Above the fireplace in the home of Cheryl and Gerald Carter in Lynchburg is a
pencil drawing of Sean, a newborn wearing a knitted cap and enfolded by his
clothes. He is twin to Donovan, asleep down the hall. "Every day I look at
Donovan and see evidence of Sean's potential, because they were identical,"
Cheryl Carter said. "I have to live with him playing with his reflection. And
wonder."
Donovan and Sean were born Dec. 18, 2000, at Virginia Baptist Hospital. Sean was stillborn, recorded as a fetal death, and added to the state's vital statistics. Only Donovan is entitled to a birth certificate and it doesn't mention a twin. "It's just not right," said Cheryl Carter, the new Virginia director of the National Stillbirth Society. "Until the day I die I will miss that child. And to be not able to get something from the commonwealth he was born in that validates that I gave birth to him, isn't right."
The society wants Sean's birth - and every stillborn infant's birth - recognized. An infant is considered stillborn if it has died after 20 weeks of gestation. A full-term gestation is usually about 38 to 40 weeks. Carter is part of a national movement under way state-by-state to have a "Certificate of Birth resulting in Stillbirth" available to parents who lose a nearly full-term baby.
The effort began in Arizona when the Missing Angels Bill became law in 2001, and other states have followed. Carter hopes to see Missing Angel legislation enacted in Virginia. Some 26,000 stillbirths are recorded every year in the United States. In Virginia in the year 2000, some 7,248 fetal deaths were recorded (not including induced abortions), said Calvin Reynolds, acting director for the Virginia Center of Health Statistics. Of those, he said, 6,683 were under 20 weeks gestation, and 565 were 20 weeks or more. "If a fetus gives any sign of life, a birth certificate is needed."
For the Carter family, Sean was an individual from the first ultrasound, which showed the twins stacked one above the other. "They were our bunk-bed boys," Carter said. "They were 13 weeks. You could make out the little head shapes. They stayed that way. Donovan, he was the lower one, then Sean." And they have the videotape of the ultrasound at 21 weeks, alive together and kicking. The twins shared the same placenta, but had separate amniotic sacs. Carter's pregnancy was her fourth and a planned pregnancy for her and husband, already the parents of three. The twins "were a beacon of light that year."
During the routine 28-week ultrasound at her obstetrician's office, the ultrasound technician unexpectedly said she'd be back in a minute. And the obstetrician came in. "What's wrong?" Carter asked. He told her one of the twins had died, probably a few days earlier. She remembers twin-to-twin transfusion being mentioned, a complication of twins sharing the same placenta. She called her husband and they went home, but Cheryl Carter developed a fever that night. "They sent me to the hospital for observation. I stayed for a month."
She remembers the time as a twilight zone. Doctors wanted her to carry the twins until week 32 to improve the premature infant's chance of survival. "I spent every hour of every day for the next month in terror that we would lose Donovan."
She was on the maternity ward, and the hospital bereavement program put a teardrop image on the door so that people would be aware of the loss. Carter said that she got extraordinary help from Evelyn Harker, R.N., shift manager at the birth center and coordinator of the Resolve through Sharing bereavement program. As the delivery date neared, Harker had explained to her that after three weeks in-utero after his death, the condition of Sean's body was uncertain.
The twins were born by cesarean section. "There was deterioration. His body was soft, but the features were there. He was brought to us, we spent a couple of hours with him."
For Sean, as for other stillborn babies, Harker gave the family memories. She took a birth photo of the stillborn Sean (the source of the pencil drawing the family now has). Harker had covered him with a newborn outfit, put on the little cap and birth bracelet. She made plaster casts of his feet and handprints from his tiny hands. "I can't express my thanks for that kindness - there is no way."
Harker, in an interview, said that the hospital's bereavement program provides the parents with mementos and a souvenir birth certificate. While most parents aren't as intense about wanting a birth certificate for their stillborn child as Carter is, if it were available, most would want to have it, Harker said. If you've not had that kind of loss, you don't understand the true love and attachment and grief," Harker said. "The parent will grieve the loss of a baby for a lifetime. They want to remember that baby forever." A certificate of birth resulting in stillbirth "would be reasonable for the state to consider," Harker said.
Miscarriage and stillbirth are different. "The criteria we use is weight," said Harker. Less than 500 grams (a little more than a pound) is a miscarriage. "But, it is the loss of a baby, no matter what it weighs." Sean weighed 1 pound, 11 ounces at 26 weeks. One of Carter's regrets is that she allowed herself to be discouraged from pursuing an autopsy to confirm the cause of Sean's death. The fetal death certificate simply says "unknown" with no mention of the possible twin-to-twin transfusion.
Obtaining a central data bank on autopsy findings is one of the goals of the National Stillbirth Society, which estimates that one in every 115 births is stillborn. "The lack of autopsy results on stillborn infants is part of the problem of not being able to determine and get good facts on what might be causing the majority of stillbirths," said Carter. In Virginia, she said, it is not a medical examiner who signs off on the cause of still death, but the doctor who delivered the baby. "Where's the checks and balances?"
Deborah Little-Bowser, state registrar for vital records, said the state code now allows birth certificates only for live births. Little-Bowser said that most parents "seem to be pretty satisfied obtaining a certificate of fetal death." She said the issue has come up only recently, but that the amount of work it requires of the state to add the certificate "would have to be looked into."
Carter can be contacted at
Stillnomoreva@aol.com or 434-237-2706. For more information on the Net, go to
http://www.stillnomore.org
Last Updated 07/20/2006 Design donated by Web-Writer