It’s an incredibly long and emotional road when just one family member needs a heart transplant — but for a family in England, that road has proven to be three times as tough.
When Louise Snape, 31, and her fiancé Simon Williams found out she was pregnant on Christmas Eve more than three years ago, they were ecstatic. But that jubilation would soon turn to heartache after doctors discovered she and her twin daughters suffered from a rare condition called dilated cardiomyopathy, which has left all three needing heart transplants.
Three-year-old Katie was the first to be diagnosed.
“I knew something was wrong with Katie more or less when we bought her home,” Snape told FOXNews.com in a phone interview.
“She was going blue around the mouth and not feeding properly. She didn’t even have the energy to cry. It took me months and months — but I finally convinced doctors that there really was something wrong.”
Dilated cardiomyopathy is a disease that affects the heart’s main pumping chamber. As a result, the left ventricle becomes enlarged and can’t pump blood to the body with as much force as a healthy heart can, according to the Mayo Clinic.
After Katie was diagnosed, Snape said her daughter’s health quickly went downhill. In December of 2007, Katie underwent a heart transplant operation at Newcastle’s Freeman Hospital in England.
“Katie has a lot more energy since her transplant. Without it she wouldn’t be alive — but her immune system is still low,” Snape said. “She coughs and catches colds quicker than a normal child and gets chest infections.”
Soon after Katie’s diagnosis, doctors turned their attention to Snape and her other daughter Lauren to see if they too suffered from the same condition.
“When the twins were 4-months-old, I was diagnosed as well,” Snape said. “Lauren was diagnosed about six to seven months ago.”
Up to one-half of all cases of dilated cardiomyopathy may be passed down in the genes from parent to child. These cases are called familial dilated cardiomyopathy, the National Institutes of Health said on its Web site.
For now, Snape and Lauren are taking medication to keep the deteriorating disease at bay.
“Lauren and I are not on a transplant list yet,” she said. “But we’re keeping a close eye on her. She’s undergoing more tests to see if she needs more medication to control the condition.”
Snape is also keeping a close eye on Katie, and is realistic about what the future holds for her daughter.
“Heart transplants don’t last forever. Katie might need another transplant when she’s a teenager. It all depends on how she reacts to the anti-rejection drugs.”
Although Snape and Simon have their family to lean on during these difficult times, they have also found solace through a web page they started about the girls. It’s called The Williams Heart Family.
“We have a lot of families who come to the site who are in the same situation,” she said. “It just makes it a whole lot easier for me to know that I can help someone else and someone else can help me.”
Despite their health, Snape said the girls have a great sense if humor and love to sing and dance. Lauren is especially fond of Britain's “Got Talent” star George Sampson. She takes his DVD to bed every night.
“The future is uncertain,” Snape said. “I can only take one day at a time and just have to carry on with the treatments and hopefully have another few years with my kids.”
The only plan Snape has right now is to take the girls on vacation.
“They have never been on holiday,” she said. “We hope we can take them to America to show them what it’s all about.”