SUNDAY STORY:The greatest gift a father could receive

Faint gibberish drifted out of the baby monitor in the kitchen of Mitch and Stacy Brookhyser’s home earlier this week as the new father put his 7-month-old twins Roxanne and Laurel to sleep.

But from the miniature cackles of joy, the love rang loud and clear.

Today, there is silence in the couple’s Huntington Beach home as they spend Mitch’s first Father’s Day at the annual convention of the Huntington’s Disease Society of America in Oklahoma City, where the couple plans to show off their miracle babies while touting the medical procedure and the doctor — Lawrence Werlin of Newport Beach — who made their births possible.

Just months into the marriage, Stacy, 31, was forced to face the possibility that she was a carrier of Huntington’s disease, a rare and fatal neurological disorder affecting about one in 10,000 Americans.

After Stacy tested positive for the gene and the couple acknowledged there was a 50% chance that the disorder would be passed to their offspring, they researched options and learned about Werlin and preimplantation genetic diagnosis, or PGD.

Using in-vitro fertilization, PGD tests a single cell of a six- to eight-cell embryo — which translates roughly to the third day of development — to determine its genetic makeup. Embryos that do not carry the gene for the specific hereditary disorder for which they are being tested are transferred to the mother, thus eliminating the disease from the family lineage.

“The whole situation is very sad, and you feel you have no control over the HD monster, but PGD makes me feel like I’m in control,” Stacy said, describing Huntington’s as “Alzheimer’s and Parkinson’s put together.”

“Yes, the HD monster may eventually get to me, but it will never get to my children.”

Though it is not covered by most insurance plans, the procedure has become more common in the past five years, and can be used to diagnose several other hereditary illnesses, such as Tay-Sachs, cystic fibrosis and hemophilia, Werlin said.

“The critical thing is you now have the ability to identify the specific gene in an embryo before you put it back and hopefully eliminate it from future generations,” he said. “It’s very exciting for these parents.”

Since Werlin founded the Coastal Fertility Medical Center in 1982, he continues to garner joy from the many couples he has assisted with various fertility issues.

“To play some small role in helping their lives to improve and giving them something they wanted so desperately is such a gratifying experience for me,” Werlin said.

Of course, PGD — like many medical procedures — is not without its risks, which include the possibility of negatively affecting the development of the embryo.

The Brookhysers realize there are also ethical implications to the procedure, but as an alternative to prenatal diagnosis, an invasive technique carried out between the 14th and 20th week of gestation, they felt it was their best option.

“The problem with PGD is that it gets down to the very core of people’s values and religious beliefs, and people might consider it manipulating life,” Mitch, 42, said. “It’s a personal choice, and you have to really search yourself to figure out if it’s right for you.”

After enduring painful testing, a number of difficult decisions and countless anxious hours spent in doctors’ offices, the Brookhysers agree that it was nothing compared to knowing that their children are safe and healthy.

“The most important thing from all this is that those girls are going to know they were really, really wanted because we went through so much to have them be HD-free, and that’s a good thing to grow up knowing,” Mitch said, Roxanne bouncing on his knee.

Though he loves both his daughters, Mitch admits that there are moments when he wonders if raising a “singleton” would be easier than nurturing twins.

“There are plenty of times when one of them is being a problem and the other is being totally cool that you look at the cool one and think, ‘That’s what it would be like to have only one,’” he said. “It’s double the diaper changes, double the feeding, double the crying … “

Stacy was quick to interject, reminding him that it is also “double the smiles, double the personalities and double the love,” and he smiled in agreement.

ON THE WEB

Stacy Brookhyser has created a website describing preimplantation genetic diagnosis and other factors of Huntington’s disease. Anyone looking for more information can visit www.hdfreewithpgd.com or e-mail any questions to info@hdfreewithpgd.com.