Indiana couple anxiously awaiting conjoined twins
March 17, 2014 10:59 AM
by CHAUNCEY ROSS
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Counting the days to a blessed event is easy. It’s common and fun for a lot of expectant parents.

Counting the days to a life-changing event, like the one that Michelle Van Horn is about to experience, is overwhelming — if it can be described at all.

Van Horn, of Indiana, and her boyfriend, Kody Stancombe, are expecting again. Already the parents of a 19-month-old son, Riley Van Horn, their target date would be May 8.

But that’s being moved ahead four weeks to early April because she has twins on the way. Boys, the doctors say.

When they arrive, they will be named Andrew and Garret.

What their following days will be like is anyone’s guess.

About 25 days from now, Van Horn will deliver conjoined twins — attached to each other from chest to belly button.

The odds of such a birth are about 1 in 200,000.

The babies share an umbilical cord, they’ll have one liver, and although ultrasounds have shown two hearts, one is much weaker and the babies will depend on the strong one.

That rules out trying to separate them, doctors told her.

“It’s scary. It has been a lot for me to take in,” Van Horn said. “I just take it day by day.

“And I’ve been so mad at doctors lately. … I’m tired of hearing bad news.”

[PHOTO: Michelle Van Horn at home in Indiana with her son, Riley, 19 months. She and boyfriend Kody Stancombe are expecting conjoined twins this spring. (Tom Peel/Gazette Photo)]

Van Horn, 25, said she and Stancombe planned the pregnancy and she suspected in September that she had conceived. She confirmed it with a home pregnancy test.

The maternity department at Indiana Regional Medical Center gave her an appointment for an ultrasound just before Thanksgiving, when she had reached about 10 weeks, but by then she had an idea her pregnancy was different.

“I was expecting to go in there, knowing I have twins on my side of the family and Kody has, too. … So being told I had twins wasn’t such a big shock to me,” Van Horn said. “But they said there was a complication, and they had to send me down to Johnstown. The technician that did the sonogram, the way she was looking at the pictures and talking to me, I knew there was something wrong.

“The doctor finally came in and said ‘well, we found that you’re going to have twins, but they’re conjoined and there’s only one heart.’ I broke down, I started freaking out, I was crying.”

Using a 3-D sonogram, doctors at the obstetrics and gynecology section at Conemaugh Memorial Medical Center found the boys connected, and apparently also with one heart, she said.

Van Horn then went to Pittsburgh for a fetal echocardiogram at Magee Women’s Hospital.

“They found a second heart but it is not big enough or strong enough,” Van Horn said. “They told me that if they were to separate them, that could kill them both. Because both hearts need each other.”

Her obstetrician, Dr. Adib Najib Khouzami, at Conemaugh Health System, laid it on the line for Van Horn.

“He showed me all the research. He says this is one of the rarest cases, where basically they have a 2 percent chance of surviving. He is trying to prepare me for the worst, but he is trying to give me some encouragement. And it’s a battle between the two.”

She has pitted hope against hope that maybe the doctors are wrong.

“I would go in for my sonogram and I would hope and pray that maybe they were wrong, maybe they would find a second heart, or that maybe one was laying on top of the other and things just looked the way they did.

 

Complications have come up for Van Horn, but the babies are fine, she said.

“They are developing right on track, they’re growing, they’re developing just the way they should in a regular normal pregnancy,” Van Horn said. “The sonogram showed they’re breathing OK. And they’re moving! It’s like I’m a human punching bag right now.”

Her last check-up in Johnstown was on March 4.

In terms of the pregnancy, she said, she has had more back pain, more sickness and more sleep loss than when she carried Riley.

But working fewer hours means less pay, and she’ll have no income for a time after giving birth.

Van Horn works at Moorhead House, a personal care home in White Township, as a personal service assistant and certified medical assistant.

“My hours have decreased in a big way, but my boss is good at helping me out,” she said. “But with me being off work and not having an income, I’m going to have trouble with my rent and buying stuff in general that I need.

“The Salvation Army has been helping me a little bit. All my co-workers are very good about supporting me. My boss worries about me all the time.”

Van Horn and Riley live at the Homestead Apartments, a subsidized housing plan at the east end of Gompers Avenue.

Riley, for the record, is energetic, healthy and happy –— especially when he sees visitors at their apartment. He loves the animated PBS TV character Calliou, has fun pointing and commanding with an Xbox controller, and enjoys standing on a stool to look out the window at the Homestead complex.

Rental restrictions there have kept Stancombe from moving in, Van Horn said, so they are looking for another place to live that’s closer to their workplaces.

 

Stancombe, who grew up in Homer City and graduated from Indiana Area Senior High School, has worked five years for the Indiana Printing & Publishing Co. He started briefly in the distribution department at The Indiana Gazette but has worked for several years now at Gazette Printers, the commercial printing division, along Indian Springs Road in White Township. And Van Horn, a Plumville native and Marion Center Area High School graduate, once worked for the Gazette, delivering newspapers.

“We are trying to get Kody in, we have a lot of paperwork started to get him to move into my apartment,” she said. “They have to do all these background checks on him. … Guidelines have to be met and things have to be properly processed, and I understand that. And if he can’t move in, I have to have written permission from them saying that he’s allowed to stay a certain amount of time, and once that time’s up, he’s not allowed to be there.

“But he’s the father of these twins, he’s the one who’s literally trying to financially help me and support me and everything, and they want to restrict him from all that?”

Even more hurdles and unanswered questions lie ahead for them.

How can they find a suitable car seat for conjoined twins?

And clothing for twins joined at the chest? Until she knows exactly how her babies are joined, it wouldn’t make sense to start buying off the rack at Walmart.

“I have looked all over online for … a car seat, and I’ve been told there’s a lady that’s willing to help make clothes for the twins. But it’s difficult to find anything for conjoined twins. I know that anything found is going to be expensive.”

And all those arrangements — finding child care, handling the babies’ medical care, along with paying rent, putting food on the table and getting clothes and a child safety seat, after losing her income — are overshadowed by the obvious issue. Will the boys thrive? Will they have the fight in them that they need to overcome the dark prospects they face?

 

According to the University of Maryland Medical Center, the odds are stacked against conjoined twins from the earliest weeks after conception, when an embryo begins to divide into identical twins but does not complete the process.

Conjoined twins can be connected in one of about a dozen known ways, and from the description she was given, her babies would be classified as thoracopagus twins, who are joined at the upper torso.

“Thoracopagus twins share a heart, which, depending on how closely they are joined, makes it nearly impossible to separate them and save them both,” according to the university’s website. “Thoracopagus twins make up about 40 percent of all conjoined cases.”

There are more facts. More conjoined twins in the womb are boys, but girls are three times more likely to be born alive.

Overall, the university reports, 40 percent to 60 percent of conjoined twins are stillborn, and 35 percent live about a day. That leaves the overall survival rate at 5 percent to 25 percent.

The university website doesn’t specifically address issues such as the disparities in the hearts of Van Horn’s babies.

 

Van Horn said she is well aware of the chances, and it’s been weighing on her through much of her pregnancy.

She has been given a firm schedule of what will happen next.

At an office visit next week, she’ll meet with a neonatal intensive care unit physician who will oversee her babies after they’re born. Dr. Khouzami will decide when Van Horn will have to quit working, and he’ll set a date for delivering the twins, which must be done by cesarean section.

That has Van Horn a little queasy.

“I’m terrified. I’m not up for the whole cutting my stomach open part. … The doctor asked if I wanted to be awake for this and I said yes,” Van Horn said. “I know I’m going to have to have an epidural for this. I had my son naturally, so this C-section is a whole new ballgame for me.”

Delaying their birth to the normal 40 weeks of pregnancy is not even an option.

“The doctors also said that going to a full-term pregnancy, I could have a stillbirth. They also are not sure if they will make it past birth or how long they will live.”

Van Horn said her maternity care even has come with a recommendation from one of her doctors to terminate the pregnancy. She said she and Stancombe initially agreed to it, but she changed her mind and has been steadfast on carrying through.

“I believe that just because there’s a bump in the road, it doesn’t mean you should just give up,” she said. “So I’m willing to sit there and fight everything for my children, regardless of the outcome.”

 

As the days pass and the clock ticks down to the birth of her sons, Van Horn and Stancombe still are unsettled on a lot of their plans.

“We haven’t bought anything for the babies because we are unsure if they are going to make it — so we have no diapers, no clothing, anything,” she said.

But the constant, according to Van Horn, has been her determination to give her babies a chance.

“For me, it is that I’m a very stubborn, bullheaded person, and even though I knew what the outcome could be … I’m a fighter and I believe in fighting for this,” Van Horn said.

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