Conjoined twins go home
With 20 fingers, 20 toes, four legs and four arms that just can’t seem to figure where they belong, newborn twins Andrew and Garrett Stancombe came home to Indiana on Monday with their parents, Michelle Van Horne and Kody Stancombe.
Easily, they bring their parents twice the joy and twice the work of a single newborn.
But as conjoined twins, they bring countless questions for their parents, family, friends and strangers alike.
Garrett and Andrew are joined from upper chest to belly button. Doctors told Van Horne that her sons share a liver and that their hearts are unequal in size.
[PHOTO: Conjoined twins Andrew, right, and Garrett Stancombe, born April 10, were welcomed home Monday. (Jamie Empfield/Gazette photos)]
A heartbeat can be seen in the top of the flesh linking their chests. It’s unclear who it belongs to.
Medical literature describing their situation as “thoracopagus twins” indicates they share a sternum and diaphragm as well.
Being born a month short of a normal full-term pregnancy, do they have any weaknesses or problems because of that?
That question has been answered: No, the doctors told the parents. The twins are fine.
“What surprised them is how well they’re doing,” Van Horne said. “They’re breathing on their own, and eating well.”
The babies had oxygen pumped through tubes to their nostrils just after they were born, but were deemed fit to be discharged from Conemaugh Memorial Medical Center in Johnstown as soon as Van Horne was well enough, after a cesarean section, to go home.
“They were on oxygen for three hours after they were born, but after a while, they were ripping the oxygen tubes out of their noses,” she said.
“They came out kicking and screaming. They’re definitely fighters, for sure.”
The way they’re conjoined, Andrew and Garrett face each other and compete for space to put their arms. Their hands wind up under each other’s necks, sometimes with one brother’s fingers in the other brother’s mouth.
“They started scratching at each other, pulling each other’s face, poking each other’s eyes,” Van Horne said.
They're true bosom buddies.
But there still are a lot of questions.
The boys were calm when guests called Thursday afternoon, and they weren’t fazed when their older brother, Riley, seemed overeager to pat the new babies.
Because they were just born April 10, it’s still too early for their family to understand what the babies’ long-term disposition will be like.
Van Horne said the twins gave them a break in their sleeping-eating schedule the previous night. The boys slept from 10 p.m. to about 3:30 a.m., demanded some attention, then slept again until 7 a.m.
But do they always sleep, wake and eat at the same time?
That answer also is no. Garrett has soundly slept while Andrew cried and pouted; Andrew has slept away while Garrett has been fed from a bottle. Already, they’re quite capable of behaving independent of each other.
To keep a close watch over the twins’ needs, the family has adopted some new living arrangements.
First, Van Horne added Stancombe to her lease at the Homestead Apartments at the east end of Indiana, enabling him to legally move in with her. And while they are developing their routine for caring for the twins, Riley is spending nights and part of his days with his grandmother, Lori Stancombe, who also lives in the Homestead Apartments.
Riley, who will turn 2 next month, spends a few hours with his parents and brothers, learning how to no longer be an only child.
“It’s nicer to have cooperating babies than when Riley was born,” Stancombe said. “Riley was a wild man.”
Garrett and Andrew stay in a combination crib/bassinette in the living room. Van Horne has begun sleeping next to them on the couch, and Stancombe, who works third shift at Gazette Printers, in White Township, has slept part of his days on a bean bag chair near the babies.
Van Horne said one of her big worries before giving birth to the twins was how to find a suitable car safety seat for them. That question hasn’t been fully answered.
Van Horne and Stancombe brought the new babies home from the hospital in a medical van, and will have to make special arrangements if they need to take them anywhere.
The medical van is the only choice, “but I have to call my insurance and talk to them to see exactly what they cover and what they don’t cover,” Van Horne said.
Thursday morning, Indiana pediatrician Christina Lubold visited to check the boys, Van Horne said. Barring any unexpected medical problem, the twins are to be seen by the doctor every three months and Lubold has offered to make house calls if transportation remains an issue for the family.
Some of the most fearful questions have been answered.
Various medical sources put the incidence of conjoined twins at anywhere from 1 in 50,000 to 1 in 200,000 births.
Between 40 and 60 percent are reported to be stillborn, then another 35 percent only survive one day.
Having defied those odds so far, Garrett and Andrew have an overall survival rate of 5 to 25 percent, according to researchers.
So far, so good.
Where to find suitable clothing for the conjoined babies was another puzzle.
Van Horne and Stancombe have solved that, for now, by dressing the babies in similar one-piece snap-up outfits. Since they can’t snap the outfits closed in the usual way, they snap Andrew’s right side flap to Garrett’s left side flap, and Garrett’s right side flap to Andrew’s left side flap.
Maybe the technique will work with button-up shirts when the boys get bigger.
And do they have special dietary needs?
After having been given formula a few times while in the hospital, Van Horne said, the babies are being fed mother’s milk. She pumps and refrigerates it, then warms and feeds it to them in bottles.
(They have strong instincts. As Kody held the twins Thursday afternoon, he had an eye-opening moment when Andrew suddenly began searching his chest for a nipple.)
Then there’s changing diapers. How does that work with the boys being face-to-face?
That has left Van Horne and Stancombe with little choice but to rest the twins on their sides for the changing.
A much more serious question for the family has been how to manage the added responsibilities that come with newborn twins.
They need twice the diapers and twice the clothing as for one baby, and need to do it on half the income since Van Horne has taken leave from her job at Moorehead House, a personal care home in western White Township.
An in-law brought a couple of bags of groceries and fresh food for dinner in a Tupperware container Thursday.
Van Horne said her boss and co-workers have helped out as well. They’ve brought a few dinners to their apartment, and plan to put together an Easter basket for Riley.
And her sister Zoe Van Horne has created a webpage detailing the family’s situation on the youcaring.com fundraising website, at http://www.youcaring.com/other/giving-help-giving-hope/151915.
There’s a hint of discomfort when they talk about the assistance being provided, especially the material kinds. It’s not a priority for their efforts.
“I don’t know … I’m not too keen on asking for something,” Stancombe said. “It’s too weird for me.”
The help Van Horne has been asking for is from other parents of conjoined twins. She’s found several Facebook pages and websites set up by others in the same situation.
“I’ve been reading stories and talking to other families and other parents. It’s nice to not be alone in a situation like this, to know there are other families that are dealing with the same things,” Van Horne said.
Their advice has been helpful, yet sobering.
“They’ve said to always be prepared for the worst that still could happen,” she said.
Some of the advice sounds a lot like what her doctors in Johnstown recommended.
“In the last conversation with the doctor, he said he wasn’t expecting for us to all be going home,” Van Horne said. “He told us to live every day, day by day, and to make the best of it,” Van Horne said. “Because we don’t know — they could be with us one minute, and the next minute not be here.”
Which remains the biggest of the unanswered questions for Van Horne and her family.