Marengo woman carrying twins conjoined at torso leans on faith
By Julie Mullen For Sun-Times Media September 1, 2011 12:35PM
Amanda Schulten of Marengo is expecting twins and knows they are conjoined. Their prospects for survival are not very good, according to doctors. The 21-year-old is dealing with the situation with her strong faith in God. | Michael Smart~Sun-Times Media
Updated: November 30, 2011 12:15AM
“A mother’s arms are made of tenderness and children sleep soundly in them,” as the famous Victor Hugo verse goes.
Facing adversity, criticism and an uncertain future for her conjoined twins, Amanda Schulten says she chose life.
Despite the devastatingly low probability of survival, the single Marengo mother-to-be said that, for her, there was just no other option.
Joined at the heart, her daughters — whom she’s already named Hope and Faith — should be given a chance to live, Amanda said, no matter how long those lives may be.
Strong in her Catholic religious beliefs, Amanda said she loves her children unconditionally and cannot interfere with God’s will.
“He has a plan for me, and for them,” she said. “We never know when our last day will be. We have to enjoy it, and appreciate health while we have it.”
Amanda has created a blog about her experiences at amanda-faithhopelove.blogspot.com, which tells the story of her journey throughout the pregnancy. On the main page is the poignant poem she penned, “I Love You.”
“No matter what happens, my soul will never leave you; If difficulties come here, I will never disappear,” the poem begins.
“I’m sure you would be proud to call me momma,” she writes, “for you are a special gift to me.”
With delivery inevitably soon, Amanda has made it a long way from April 1, when she first learned she was carrying twins during a routine ultrasound at Elgin’s Sherman Hospital.
“My family thought it was an April Fools joke,” Amanda said. “We were so excited, but we wondered why they didn’t give us pictures.”
Later that evening, Amanda received a phone call from her doctor saying she needed to come in the following Monday morning.
Not thinking much of it, she went to the appointment alone, where she was given the distressing news.
“The doctor said the babies won’t make it, and termination is the best option,” Amanda said. “I broke down. I wasn’t thinking about abortion, I was thinking, ‘Will they survive?’ Not ‘I want them to die.’ ”
Amanda never returned to that doctor’s office. But dark days would follow in the form of depression and loneliness, as many around her didn’t agree with her decision.
“Some people were really supportive and thought I was doing the right thing … while others, not so much,” she said. “They would say things like, ‘the kids would suffer’ … ‘I’m selfish if I keep the babies because of how short their life span is’ … ‘they’re just going to die anyway.’ ”
One heart, in spirit
The girls have separate heads but are fully connected at the torso, sharing a heart, a liver, and two lungs and kidneys. One twin never developed a lower body, so they share two legs, one of which is clubbed. They each have one good arm, and one has another half an arm.
Conjoined twins result from a fertilized egg that begins to divide into identical twins but never fully separates — a rare occurrence found in only about 1 in 100,000 pregnancies.
A Caesarean section is almost always necessary, and roughly half of the babies are stillborn. If they make it past birth, survival rates are low.
Although Amanda heard about 7-year-olds surviving similar conditions, the oldest documented twins sharing a heart are 3½ years old.
“My goal is to have the oldest living conjoined twins,” she said.
With support from her family and church — St. Charles Borromeo in Hampshire — Amanda is now being cared for by an obstetrician who handles high-risk pregnancies at the University of Chicago Medical Center.
Still, the prognosis isn’t good.
“Doctors kept telling me they aren’t going to survive much longer,” Amanda said. “Every day, I wake up thinking, ‘Is today their last day?’ ”
Amanda was admitted to the medical center on Monday, well in advance of her Oct. 11 due date. She will remain there until delivering.
It isn’t her first time in the hospital during the pregnancy. She had a kidney infection in May and, a few weeks ago, spent her 21st birthday at Sherman Hospital being monitored for high blood pressure.
The blog retells the journey.
Besides providing photos and updates, it also offers ways to donate to help the family.
Amanda said her needs are great as a single mother unsure how to prepare for the arrival of her special daughters.
“I didn’t have a baby shower, so I really have nothing,” she said. “It’s so hard to plan for them … for their clothes.”
Amanda said her blog has been a double-edged sword, with some contributors lifting her up, and others telling her to get an abortion.
“People say really mean things. I am constantly deleting things,”
Amanda said she will stand by her choice. “If they were in my shoes, maybe they’d see it differently.”
Amanda said if mothers don’t protect their children, who else will?
Perhaps really three are sharing one heart, as she, too, shares theirs.
“You know you’re really a mom when you’re willing to give up your whole life for them,” Amanda said. “I will love my kids always and forever, no matter what.”