A Family's Journey

Rathert family

In 2011, Carmen Rathert of Clinton, Missouri, was 17 weeks pregnant and already wearing maternity clothes designed for mothers in their third trimester. This didn’t happen during her first pregnancy with her son, Nolan, who was 18 months at the time.

"My size made it hard for me to care for Nolan. I couldn’t bend over to give him a bath or even hold him on my lap at church," Carmen says. "People told me that’s just the way it is with a second child."

Carmen and her husband, Tyson, went to their family doctor convinced they were pregnant with twins. An ultrasound confirmed that they were, and the couple left their physician’s office that morning with an image of their twin boys – Lane and Luke – at 18 weeks.

By that afternoon, though, the Ratherts received a call from their family doctor expressing some concerns and recommending they have another ultrasound one month later. But the couple didn’t want to risk waiting that long. Their family doctor referred them to a perinatologist, per their request, where they received a prenatal diagnosis of twin-to-twin transfusion syndrome, or TTTS.

The boy were diagnosed at stage 4, with stage 5 meaning one or both babies were deceased. Both were showing signs of heart failure.

"The news was absolutely devastating," Carmen says. "I don’t think I have ever cried so hard, or been more scared in my life."

"This shouldn't be happening to us"

TTTS is a serious disorder that occurs in about 20% of monochorionic identical twin pregnancies. The condition is caused when blood vessels from both babies run over the surface of the placenta and connect their circulations. If blood flow is unequal, one twin receives excess blood and nutrients and is healthy, while the other doesn't get enough and is anemic and small. This can result in a number of complications and often leads to the loss of one or both babies.

The Ratherts learned their son Luke was acting as the donor twin, sending blood to his brother, Lane. While Lane had ¾ of the placenta, his brother, Luke, had just ¼.

"I kept thinking, this shouldn’t be happening to us," Carmen says. "We’re everyday, average people."

TTTS is completely outside a mom's control. There is nothing she can do to prevent it. – Carl Weiner, MD

Fetal medicine specialist

Options for critical prenatal diagnosis

The perinatologist referred the Ratherts to Carl Weiner, MD, a fetal medicine specialist at The University of Kansas Health System.

Dr. Weiner stressed the critical nature of the TTTS diagnosis and affirmed their decision to act fast. Because Carmen had an anterior placenta, meaning her placenta was in front of her babies, the risk was too great for her to have fetoscopic laser coagulation – a procedure that would separate blood vessels between the twins so they could develop independently. Their best option was a procedure to occlude Luke’s umbilical cord to save Lane. After considering their options, the Ratherts agreed to the surgery.

"There was not a perfect option. There was no easy solution," Carmen says. "Our only hope was to save the pregnancy. We made the best decision with the information that was shared with us. There was no time, the boys needed us."

New complications emerge

Shortly after the laser procedure, the care team saw fluid in Lane’s stomach. Concerned the fluid might be causing heart failure, they quickly scheduled Carmen for surgery to remove it.

During the procedure, Dr. Weiner determined that the fluid in Lane’s stomach was from a spontaneous hole in the intestine, and he successfully removed the fluid from Lane's belly.

Carmen was put on bed rest for the next 2 months and had ultrasounds twice a day. During this 8-week period, fluid was removed from Lane's abdomen four more times by inserting a needle through Carmen's stomach.

The end of a long wait

The Ratherts and Dr. Weiner wanted to keep Lane in utero for 32 weeks to give the baby as much time as possible to develop. When they hit the 32-week milestone, the staff at the Center for Advanced Fetal Care threw the Ratherts a baby shower at the hospital. The Ratherts then set a new goal: 34 weeks.

Then, at 32 weeks and 6 days, Lane needed fluid removed from his stomach for the fifth time. Dr. Weiner decided it was time for Carmen to deliver.

Lane was born June 25, 2012, weighing 3 lbs. and 3 oz. He stayed in the Neonatal Intensive Care Unit for 9 weeks and had 2 surgeries to repair the hole in his intestine. The first procedure was performed when he was just 2 days old.

A heartbreaking goodbye

After delivery, the Ratherts were able to meet and say goodbye to Luke. Carmen said the team showed her great care and concern, and gave the family photos of Luke. They even took the time to take pictures of him with his brother Nolan's matchbox tractor.

"I haven't been able to look at the photos yet," Carmen says with pain in her voice. "But I know someday I will."

A smiley, kind and loving kid

Carmen notes that despite all Lane has been through, he remains a loving, happy little boy.

"Lane is such a blessing to our family," Carmen says. "He is truly a miracle. My husband and I say if something happens to us, we want to be taken to The University of Kansas Health System because we have confidence in their ability to take care of us."

She also says that expecting or new moms who feel like something may be off should trust their instincts and get a second opinion from a specialist.

"Trust your mommy instincts if something doesn’t feel right," she says. "Lane has never been anything but a smiley, kind and loving kid. Finding Dr. Weiner was a miracle for us."

Lasting relationships made

The Ratherts spent a total of 17 weeks at The University of Kansas Health System. Due to Lane’s history, the Neonatal Medical Home monitored his health until he was 5-years-old.

"It was bittersweet for us when Lane turned 5 and we had to say goodbye," Carmen says. "The nurses and doctors all knew our names and greeted us every time we came in."

The Ratherts brought Lane to several of the annual events that reunite the neonatal care team with the tiniest of patients they treat. Using Facebook, Carmen still keeps in touch with some of the staff that cared for her for so many months.

"We are eternally grateful for the love and support shown to us by all of the staff at The Unviersity of Kansas Health System, our community and our family," Carmen says. "Tyson and I talk to our children about their brother and our faith pushes us through each day. We are so blessed to know we will all be together one day again. Lane has even expressed that when he meets Luke, they will trade places and play tricks on us since they look just alike."

Rathert twin boys

Expertise matters

The University of Kansas Health System was the first in the region to offer fetoscopic laser photocoagulation for babies with twin-to-twin transfusion syndrome over a decade ago. Their experience is unmatched.

Our advanced fetal medicine team specializes in offering this and other innovative treatments and tests for high-risk pregnancies.

Learn more

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