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Marching to fund premature baby research

The birth of a first child is supposed to be one of the most exciting and joyous occasions in a coupe's life. But for Sonoma residents John and Jody McMillan, that joy turned into overwhelming fear when their twin sons David and Derek were born as micro-preemies - babies born so premature they weighed less than 2 pounds each.

"We were being told if they were born that day, they'd die," Jody said.  

The McMillans count themselves as lucky because their children did survive. David and Derek are nearly 2-years-old and while the pair face continued health issues, they are happy toddlers on the way to a promising life. And now the McMillans are serving as the ambassador family for the North Bay March of Dimes, a walk this Saturday, May 14, at Howarth Park in Santa Rosa to raise research funds to prevent premature birth as well as research to find treatments for the myriad health conditions that premature babies can face.

"We want to get the word out. It's a big issue," Jody said. "The state is making all sorts of cuts, families don't have the preemie services that were once there."

John and Jody said there were no signs of trouble when they found out they were pregnant in December 2008. Their excitement was mixed with some trepidation when they found out in January they were having twins, but everything progressed as expected.

It was during a routine ultrasound in early May that doctors determined Jody's cervix was dilated 3-centimeters, a sign that labor was progressing. The couple was rushed by ambulance to the Kaiser Permanente Roseville Medical Center, which is equipped with a neonatal intensive care unit (NICU).

"That's when all hell broke loose," John said.

Upon arrival, the couple was told that David's amniotic sac was hanging out and that if the babies were born that day, at age 23 weeks and six days, there was little chance of survival. Doctors immediately restricted Jody's movement and loaded her up with magnesium sulfate, a drug used to stop preterm labor that can have significant side effects.

"The dose (of magnesium sulfate) was so high I couldn't see for a couple of days," Jody said.

For 11 long days, Jody remained hospitalized while the doctors tried to stave off labor. Finally, on May 16, David wouldn't wait any longer, and was born weighing just one pound and 13 ounces.

"He didn't cry, he didn't move," Jody said.

John added, "When he came out he looked like a real small version of a play doll. His mouth was open but he didn't make any noise, he just gasped for air."

He was immediately rushed to the NICU where a team of doctors and nurses began the fight to save David's life. Micro-preemies can face an array of health issues as the critical organs have not had time to properly develop. David was immediately placed on a ventilator to help him breathe, which he stayed on for months.

"When I went down to visit David for the first time, you're just in awe of all of the equipment, the monitors, the wires, the IVs and the alarms going off," John said. "The nurse asked me for my wedding ring ... and she slipped it over his foot and up his leg. He was that tiny."

As the couple processed their oldest son's condition, doctors fixated on what to do about Derek. If he were also born that day, he would face the same dire health issues as David. But stopping labor can have its own risks, drastically increasing the possibility of a serious infection that could kill both the mother and baby. Jody was committed to giving Derek the best chance at life, even if it meant sacrificing her own body.

"It was controversial to keep Derek in," John said.

For three days, Jody held on to Derek. On May 19, she broke into a fever, the first sign that an infection had set in. Within 20 minutes of detecting the infection, Jody was wheeled into an operating suite for a cesarean section delivery with John at her side. Just like David, Derek did not make a sound when he was born weighing just 1 pound and 12 ounces, and was rushed to the NICU.

"Now you're told all of the scary statistics," Jody said, referring to the potential for retardation, deafness, cerebral palsy and numerous other conditions preemies are at risk of developing.

"The outlook was just not pretty," John added.

The McMillans began three months of torture, as they held a bedside vigil for their boys and waited to see what was next. Within days of birth, both David and Derek required surgery to repair their patent ductus arteriosus, a connector between major blood vessels in the heart. Both were on ventilators for months - when David was finally taken off the machinery on July 4, it was the first time his parents discovered he had dimples.

"You get used to your child turning blue, you say 'Oh he'll start breathing again, it'll be fine,'" Jody said, adding that the couple was barely able to hold their children because the risk was too great.

Jody spent days and nights living in an RV in the parking lot of the hospital while John spent as much time as he could in the hospital while also commuting to his construction management job. The watched their sons recover from surgery, fight infections and slowly but surely grow. Oddly close to their actual due date, on Aug. 11, Derek came home; followed by David on Aug. 23.

While the McMillans were thrilled to have their boys home, they weren't yet out of the woods. Doctors told them the babies could not interact with any children or infants or any adults with sicknesses because their little bodies were not well equipped to fight off even common diseases. Jody caught a cold that she passed to David, which caused him to stop breathing and require CPR.

The McMillans remained in isolation from most of the world, with doctors appointments every week. Holidays with the extended family and other normal rituals were put on hold as they kept their sons in a protective cocoon from anything that could cause harm. Days were filled with speech and physical therapies to help David and Derek reach the regular milestones. Finally, on Friday, April 29, they were told the boys were strong enough to handle public places.

"We had our first play date, it was so nice to feel normal," Jody said.

The young boys still face uncertainties about their future health and will require therapies to continue to progress, particularly David who is deaf in one ear. Luckily, the McMillan's insurance has covered all of their health needs.

The boys will be out walking the track with their parents during March of Dimes this Saturday along with some of the other families who have had similar experiences with their own children. Team McMillan Boys are raising money for March of Dimes, an organization originally started by President Franklin D. Roosevelt in 1938. To donate, visit  www.marchforbabies.org and search John or Jody McMillan under "find a walker."