Sharing an Uncertain Future
"You guys been keeping track?" the doctor asks. Kevin produces a blue folder with spreadsheets he created to log every bottle and diaper the babies go through. (The girls sport diapers with their names printed on the back in Magic Marker, to make sure record-keeping is accurate).
"Any concerns, issues?" Watson asks. The parents shake their heads.
"Only if you can prescribe something to make them both sleep at the same time," Kevin jokes. Two hours straight is the most either parent has managed to sleep since bringing the girls home.
Watson pulls out a yellow tape measure and wraps it first around Erin's arm, then a leg, before repeating the drill with Jade. Since the babies can't be weighed separately, the measurements determine how much they are growing. Doctors also need to know heading into the surgery whether one baby is outgrowing the other.
Since coming home, the twins have needed no special medical treatment. Because their umbilical cords had fused into one, cutting it left a large wound that is healing slowly. Bedsores became another concern, alleviated by salves and a special gel mattress. And burping, the couple says, is virtually impossible since the babies can't be positioned easily.
"Sometimes I pat one's back, and the other one burps," Melissa says.
As they prepare for the surgery, the team at Children's will use computer models to simulate the separation and take sophisticated images of the babies' anatomies. Even with successful separation, the girls likely will face additional plastic surgery as they grow older, doctors have told the parents. Their breastbones are joined, forming a "y" where the fusion begins, with their bodies separating again below the navel.
"They'll use Gore-Tex to create a portion of the diaphragm, and they may have to graft on more thoracic bone," Kevin says.
The girls are thriving despite their rare condition. "We have two healthy babies who just happen to be stuck together," their father says.
Over the next few months, members of the Children's team will begin holding weekly meetings to plot out the operation. Although advanced imaging techniques in utero assured doctors that the girls do not share a stomach or heart, cardiologists want the babies to undergo an MRI soon to determine conclusively whether any parts of the two hearts are joined, since they share a single protective sac. Their common liver is of far less concern, since that organ can be split and is capable of regenerating.
Insurance covers the family's medical bills, and a military charity donated thousands of dollars to cover baby furniture, monitors, clothes and miscellaneous items. But forfeiting Melissa's paycheck has stretched the family to the limit. There was no money to repair the aged Lexus that blew its transmission when Melissa was in the hospital, and the remaining Mazda is too small to carry a family that suddenly numbers six with the twins' sister, Taylor, 2, and brother, Kevin Jr., 11.
The couple learned in November that Melissa was carrying conjoined twins when they went for an ultrasound that they thought was merely going to tell them their baby's sex. Melissa was 18 weeks into her pregnancy. They were thrilled when the technician pointed out two heartbeats on the monitor. Then the bombshell dropped.
"The technician suddenly asked if we were Christian," Melissa recounts. "I knew something was wrong. Who asks that in the middle of an ultrasound?" Terminating the pregnancy, the couple says, was never an option. State-of-the-art 4D ultrasounds showed what the babies looked like down to the hair on their heads, "so we were mentally prepared," Melissa says.
In the coming weeks, doctors will prepare the twins for surgery by implanting tissue extenders around their fused abdomen. The extenders are like saline balloons, which will be enlarged gradually to stretch the babies' skin so the massive surgical wound can be closed once they're separated.
"We're not foolish enough to think it will be a walk in the park," Kevin says. He and his wife realize that they could still lose one baby, or both, he adds, and they force themselves to talk often about the risk, trying to condition themselves emotionally.
Jade and Erin are napping in their bassinet, mirror images of contentment. Watching, their mother softly weeps.
© 2004 The Washington Post Company