HASTINGS, Minn – A pregnant Twin Cities mother has traveled to Denver, Colorado to prepare for a rare procedure to give birth to conjoined twins.
Last winter, Amber McCullough, 31, of Hastings, Minnesota learned she was expecting one baby. Shortly into her second trimester she visited a doctor, only to walk out with a stunning revelation.
"I went in thinking I needed some simple antibiotics at an urgent care in Burnsville and I walked out of there with a diagnosis of conjoined twins. I was in shock," said McCullough.
McCullough, a United States Army Reserves Captain and Twin Cities attorney serving victims of domestic violence, is a divorced single mother to a six year old boy, Tristan.
McCullough said last fall, she entered a new relationship, which brought an unplanned pregnancy.
"I don't think a baby is ever bad news, it can be hard news and it was, but I figured whatever life throws at me I'm determined enough to take on," said McCullough.
McCullough said her pregnancy became more complicated as she visited several hospitals for consultations, including a Philadelphia hospital, and received conflicting opinions of whether to move forward with the pregnancy.
"I walked out of there thinking I must terminate out of my best interest, otherwise I'd likely be risking my life, and I have a six year old to think of," said McCullough. "So far in this journey we have gone from okay, we can save both, we can save none, we can save one, and it's been a roller coaster."
McCullough chose the University of Minnesota Maternal-Fetal Medicine Center to proceed with the high risk pregnancy under the care of Dr. Tracy Prosen, who is also the Fetal Diagnosis and Treatment Center director.
"It's a balancing act. What are the risks to mom in this pregnancy and what are the risks to baby or babies? This is a situation where Amber has known all along this is a risk to her own health, and we've been monitoring closely for that," said Dr. Prosen.
McCullough named the twins, Hannah and Olivia. Dr. Prosen diagnosed them with what is known as a Thoraco-omphalo-ischiopagus-tripus conjoinment, a term meaning the twin girls are joined from mid-chest to pelvis, sharing an abdomen, liver and intestinal tract, with three legs. The girls have two separate hearts and kidneys.
Hannah is the healthier twin, while Olivia has a weaker heart and only one leg, along with a congenital brain malformation called a Dandy Walker variant. With such health complications, doctors advised McCullough that Olivia is not expected to survive birth, while Hannah has a chance at survival.
"The cards are stacked against us. The reality right now is there is nothing they can do for Olivia. That is very hard to accept. People have asked me if I am ready for that. Course I'm not. Nobody is. I don't think you can prepare for losing a child," said McCullough, through tears. "You never picture yourself having conversations about contacting funeral homes, cremation, or memory baptisms. You don't think of having to make those arrangements for your kid when you should be painting their room pink or something."
Dr. Prosen recommended Hannah's best option would be for McCullough travel to the Colorado Fetal Care Center, which is one of the only centers in the world that performs a surgical separation, called an EXIT procedure, an acronym for Ex Utero Intrapartum Treatment Procedure, while the babies are still attached to the mother's placenta.
"So far we have been lucky," said Dr. Prosen. "But when we disconnect the umbilical cord, they will have to do a lot more for themselves that Amber is doing for them now and so that is going to be the big trial. The babies would likely fail rapidly after delivery so their best hope or Hannah's best hope would likely be for starting that separation procedure while still attached to the placenta."
Dr. Prosen said in an ideal situation, the babies would be stable enough to be delivered and allowed to grow and develop on the outside before separation, but in this case, it would leave little chance for survival.
The day before she left for Colorado, McCullough's family and friends gathered to send her off with well wishes and messages of faith, in what is known as a "prayer shower".
The group read prayers, opened keepsake gifts for McCullough to remember Olivia and honor both babies' lives. Facing the pregnancy alone, McCullough found support with the Twin Cities group, Prenatal Partners for Life, which supports parents facing an adverse diagnosis.
"There are few things sacred in life, your children will always make the top of that list, and of those few things sacred in life, they are always worth fighting for, even if you lose the battle," said McCullough.
Dr. Prosen said statistics of conjoined twins are difficult, since many are lost in early pregnancy or families choose to end the pregnancy, but says the most accurate data shows conjoined twins are reported to occur somewhere between 1 in 25,000 to 1 in 80,000 pregnancies, and encompass a half percent of all identical twin pregnancies.
McCullough acknowledges she's received criticism online for her decision to move forward with her pregnancy.
"It's really the ultimate moral dilemma, it's been very difficult, but at the end of the day, if it's absolutely necessary and I'd lose both of them if we don't do this, then we need to do this," said McCullough.
McCullough points to the commitment she learned in her Army career.
"I will never quit. I will never accept defeat. I will never leave a fallen solider. Why don't my kids deserve that same kind of commitment?" she said. "I think it's very important their story be told. With my girls lies a message of life, strength, beauty."
McCullough is expected to give birth to the twins next week. Follow her journey on her GoFundMe page.