Holding on to Hope

Girl born with rare genetic disorder defies the odds
Jan. 01, 2013 @ 04:24 PM

When Hope Hyde was born May 23, doctors at UNC Hospitals told Lance and Betty Lou Hyde not to expect their daughter to make it to June.

Now, as 2013 begins more than seven months later, Hope is living at home with her parents and older brother and sister.

After she was born in Chapel Hill with a rare genetic disorder called Trisomy 18 — only one in about 3,000 babies has the condition, which caused two holes in her heart and a host of other problems — doctors told the Hydes that no one on staff could properly care for the child, and that she would most likely die before they could get help.

Not wanting to quit on their daughter, the couple took her home and found a pediatrician in Sanford and a specialist in Winston-Salem, and they started praying. So far, Hope is beating everyone's initial expectations.

"Four days after we had her, they told us to enjoy her while she's here," Betty Lou said this past weekend at the family's home off of Daniels Creek Road in northwest Lee County. "They thought she'd never make it out of the hospital. ... When she turns a year old, we're going to go up there and show them."

Hyde, 29, had to quit her job in Moncure to take care of Hope, but she said she's not complaining because she wants to spend as much time with her third child as possible.

"You have to take it one day at a time because you might go to sleep and ..." she said, pausing before finishing her thought: "We just pray every night before we put her to bed and ask her to please wake up in the morning."

The family has medical insurance, she said, but it's not enough due to the constant hospital visits and in-home equipment costs. They're eligible for Social Security and Medicare to help pay for Hope's bills, but they get it inconsistently because Lance, 28, works 24-hour shifts as a paramedic and sometimes puts in too many hours to qualify for the government aid programs.

But he said his wife has done an exemplary job at home with Hope and the other kids — 2-year-old Emma and 7-year-old Tucker, plus an 11-year-old niece, Nicole Boyce, who's also staying with them — allowing him to stay focused on his job now that he's the family's sole provider. Also contributing to his peace of mind, he said, are websites and videos dedicated to the disorder and the children afflicted with it.

He said that while much of what he sees are tributes to children who passed away, they do manage to lift his spirits some, because he frequently sees kids who have lived to be several years old despite the odds.

The family is also taking lessons from Hope herself. Betty Lou said although Emma — who has been known to cover her baby sister in kisses — is too young to really grasp the situation, Tucker has handled it well. And as for the mother herself, she said she's been inspired to try to visit local high schools and advise students to hold off on having a baby until they're emotionally and financially stable, in case they have to deal with a heart-breaking situation like Hope's.

"If I go and talk to some of these girls and talk about what I've got to go through with her, maybe they'll decide to wait," she said.

In the meantime, the family continues to count their daily blessing of waking up to Hope's smiling face, not taking anything for granted and learning more about what the future might hold. Since the disease is so rare, they have yet to meet another family dealing with it in Lee County or at the specialist's office at Wake Forest Baptist Medical Center. But thanks to the Internet and the support of family and friends, Lance said, the family is holding strong.

"I don't want to sound cliche, but it's given us more hope," he said.