Twin boys power through rare disorderThe beginning of Jack and Joe Gould’s lives wasn’t easy. When their mom, Sarah Gould, was 23 weeks pregnant, she was diagnosed with a rare disorder that affected the blood flow to each of her identical twins.
By: By Tracy Frank , Forum News Service, The Jamestown Sun
FARGO — The beginning of Jack and Joe Gould’s lives wasn’t easy.
When their mom, Sarah Gould, was 23 weeks pregnant, she was diagnosed with a rare disorder that affected the blood flow to each of her identical twins.
The procedure that would save their lives also increased the odds that the boys would be born early.
Jack and Joe spent three months in what is now Sanford Children’s Neonatal Intensive Care Unit, hooked up to various tubes and monitors. Looking at the now-7-year-old boys, you’d never guess their start to life had been so traumatic.
Years ago, a diagnosis like the one Sarah received of twin-to-twin transfusion syndrome meant her babies would die, according to Sanford Health.
Twin-to-twin transfusion syndrome occurs when blood moves from one twin to the other, according to the U.S. National Library of Medicine. Both babies may have problems depending on the severity of the transfusion. One may have too little blood and the other may have too much, according to the Library of Medicine website.
Candy Cox, a Sanford NICU nurse practitioner who has worked with the Goulds, said that when Sarah went through a laser procedure to fix the problem in 2005, it was still a rather new treatment for the disorder.
Just before Sarah was to undergo the surgery, she found out the same procedure planned for the patient before hers hadn’t been successful and the babies had died.
But Sarah said without the surgery, she could have lost one or both of her children.
Sarah and the boys survived, and on Jan. 11, 2006, when she was 27 1/2 weeks pregnant, Jack and Joe were born. They each weighed between 2 and 3 pounds.
The normal duration of a twin pregnancy is 37 weeks, according to the National Organization of Mothers of Twins Clubs. The average birth weight for twins is 5 pounds, 5 ounces, according to the organization.
The boys’ survival was not yet certain.
Their grandparents watched as nurses wheeled Jack to the NICU.
They kept watching and waiting for the second baby to come by, but Joe wasn’t breathing, Sarah said.
“They said that was probably the worst feeling they’ve ever had, was not seeing another baby go by,” she said.
Eventually medical personnel got Joe breathing and took him to the NICU, too.
Then on Feb. 4, Jack suffered severe kidney failure and was expected to die within hours.
“They told us they had done everything they could medically for Jack,” said Jeff Gould, the boys’ father. Jeff is a former Jamestown resident and graduate of Jamestown High School and Jamestown College.
Jeff’s one request was that he and other family members be allowed to hold the babies together. Because they were born premature, they’d been separated since birth in their own incubators.
When Jack was handed back to his nurse, Joe reached up and touched his brother’s head.
Jack bounced back a few hours later after he finally urinated — something he hadn’t done in a couple of days.
“I have absolutely no reason why that happened, other than divine intervention,” Cox said. “We used everything in our arsenal to help his body make urine, and it did not work. All of a sudden, something worked. I’m Christian, and I believe in God, and I’ve seen more things in the NICU that shouldn’t have happened that did that just defy explanation.”
After that, Jack continued showing improvement and was able to go through heart surgery the next day, Jeff said.
The boys went home two months later.
Now every Feb. 4, Jeff takes his sons to Mass, out to eat and to visit the NICU, he said.
“Nurses never get to see the fruits of their labor,” Jeff said. “So that’s my way to let them see what they did.”
Cox said it’s absolutely fabulous to see the boys doing so well.
“It gives me hope for all the other little babies that could be in their situation,” Cox said. “They are so vibrant. I’m so excited that they’re doing as well as they are.”
Joe needed physical and occupational therapy for a few years. Jack went through pediatric cardiology and still sees a pediatric cardiologist every year.
Today, the boys, who are best friends, run around and play like other 7-year-olds, stacking Jenga blocks and laughing when they topple to the table and talking animatedly about their “Skylanders” video game.
But unlike other 7-year-olds, these boys have already met two presidents of the United States and traveled by plane to Washington, D.C., where they visited the Smithsonian, and Florida, where they got to go to Disney World.
It’s their miraculous start to life that gave them the opportunity for experiences many only dream of.
Jack and Joe were named the North Dakota Children’s Miracle Network Champions for 2012.
The Children’s Miracle Network Champions program honors children from the United States, Canada, the United Kingdom and Ireland who have triumphed over severe medical challenges.
Through the program, Jack and Joe were able to travel and meet other children who have struggled with health issues.
“They got to high-five the president,” Sarah Gould said.