Conjoined twins to be born; just 1 can survive
AURORA, Colo. — Amber McCullough is looking to Wednesday with mixed emotions.
The Minnesota mother will deliver twin girls at the Colorado Fetal Care Center at Children's Hospital Colorado via cesarean section. No matter what, one of her daughters will not survive.
"I'm anxious and excited for Hannah and dreading what it means for Olivia," McCullough, 31, said.
Hannah and Olivia are conjoined twins who will be delivered by C-section at 32 weeks gestation, under the care of renowned fetal surgeon Dr. Timothy M. Crombleholme.
"I will get to see my girls very briefly after the delivery," McCullough said. "They will need to be intubated right away, but the doctors will hold them up real quick and I'll get a peek."
McCullough doesn't expect to have the chance to hold her daughters before doctors start the eight- to 12-hour surgery it will require to separate them.
McCullough says her daughters are joined at the chest, stomach and hips. Hannah and Olivia share an abdomen, liver and intestinal tract. The girls have separate hearts and kidneys.
"If I had my way, I'd keep them together if they both could live," McCullough said. "But it's not possible. I wish it were. If they stay together, they'll both pass."
During her pregnancy, McCullough was overwhelmed with the opinions of doctors, friends and family.
She knew she wanted to carry her daughters and give them a shot at life even though the odds were stacked against them.
"I just can't lose both," McCullough said. "There's a chance of saving one."
The latest statistics reveal conjoined twins occur once in every 200,000 births. Forty to 60% of conjoined twins are stillborn, while 35% survive only one day.
Hannah and Olivia have fared well during the pregnancy. Doctors have told McCullough that once the umbilical cord is cut after delivery, the girls will be tested.
Olivia is not expected to survive because of her heart. She only has a single ventricle and is missing valves.
Hannah's future is uncertain. She will face challenges which, for now, remain a mystery.
"We'll just have some things to work out as we go forward," McCullough said. "I'm going to make dang sure she's happy and comfortable."
Last winter, McCullough, of Hastings, Minn., 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 U.S. Army Reserves captain and Twin Cities attorney serving victims of domestic violence, is a divorced single mother to a 6-year-old boy, Tristan.
McCullough said she entered a new relationship last fall, which led to 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 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 6-year-old to think of," said McCullough. "So far in this journey we have gone from OK, 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 Prosen.
Prosen diagnosed the twims with what is known as a Thoraco-omphalo-ischiopagus-tripus conjoinment, a term meaning the 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."
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 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."
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.
McCullough, who has maintained a GoFundMe page detailing her pregnancy, acknowledges she's received criticism online for her decision to move forward.
"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 has lived at the Ronald McDonald House in Aurora since early August. Her stepmother is there, keeping her company and caring for her.
McCullough also has spent the month talking with a bereavement doula, who has helped her sort through her feelings.
"This is not something you can be ready for," McCullough said. "Nobody is ready to lose a child no matter what the circumstances."
Follow McCullough's journey on her GoFundMe page.
Contributing: Lindsey Seavert, KARE-TV, Minneapolis