martes, 16 de septiembre de 2008

He tenido 2 hijos y tengo Fibrosis Quística

Dad with CF beats infertility, hits a double

Brad Hildebrandt was told he'd never have kids. Today, he has twins.

By John Baiata
Senior Editor
NBC News
updated 9:48 a.m. ET Sept. 16, 2008

Image: NBC senior editor and producer John Baiata
John Baiata
Senior Editor

OAKLAND, N.J.- It is a scene played out on baseball fields all across the country; men whose athletic peaks are behind them, but whose competitive fires still burn, playing the game they first took up in their youth. On this night, the batter has just lined a clean single to left field, forcing the runner on first toward second base.

The left-fielder charges the softball and cocks his arm to make the cut-off throw toward third base.

Then, seeing the runner has rounded second base by just a couple of steps, Brad Hildebrandt whipsaws his arm and fires a dart to the second baseman. Runner out. Rally killed. Inning over.

Story continues below ↓

Perhaps the only thing sweeter than this play is the fact that his children are there to witness it. As Brad jogs off the field and accepts congratulatory high-fives from his teammates, he allows himself a slight smile. He has a lot to smile about.

As Brad’s teammate over the past decade, I've seen him purposely approach a ball too slowly in the outfield — goading the runner into trying to take an extra base — and then rifle a throw to erase him on the base path. He is probably the fastest runner on the team, and yet I don't recall ever seeing him visibly winded, even after rounding the bases at full speed.

But he hasn’t lost the ability to amaze me. When he recently confided in me that he has cystic fibrosis, I was stunned.

Cystic fibrosis, or CF, is an inherited, chronic disease that clogs the lungs and other internal organs with a thick mucus. Among other symptoms, CF patients suffer from frequent chest and sinus infections, problems with their digestive systems and poor growth. It affects some 30,000 people in this country, though an additional 10 million are carriers for the disease. When Brad was born, the median age of survival for CF patients was somewhere between 10 and 16 years of age.

Thanks to remarkable advancements in treatment, the median age in 2007 was 37.

Brad is 44.

"I was told I wouldn't live to see my 20s," Brad recalls. That sobering news was delivered to him when he was 14. "It was horrible. I started counting the days, the months, the years."

Three decades later, he's long past measuring his life out by the spoonful.

"I was also told there was a 99 percent chance I'd never have kids,” he says. “I'd been told that pretty much my whole life."

Today, he is happily married with two children, 9-year-old twins Bradley and Sadie.

Brad's double-header
That Brad and his wife, Pam, were able to conceive children at all is a lesson in perseverance, and the possibilities of modern medicine. They both wanted children, and had discussed it prior to marrying in 1997. The odds were not in their favor. About 95 percent of men who have CF are infertile due to an abnormality of the vas deferens, the vehicle by which sperm is carried from the testes to the urethra.

Image: The Hildebrandt family
Hildebrandt family photo
Cystic fibrosis patient Brad Hildebrandt and his wife, Pam, conceived their twins, Sadie and Bradley, with the help of in vitro fertilization and a sperm-extraction technique.

As Pam tells it: "We went to Brad's physician and told him we wanted our own biological children. We were told it wouldn't happen."

Undaunted, Pam began her own exhaustive research. She found that nearby Saint Barnabus Medical Center in Livingston, N.J., could extract the sperm using an aspiration technique and had one of the better success rates in the country with in vitro fertilization.

Before moving ahead, Pam decided to have herself screened for CF. Cystic fibrosis is caused by a recessive gene — meaning that two copies of the gene need be present for the disease to manifest itself. In other words, both mother and father must be carriers. If Pam was found to be a carrier, then their children would have a one-in-four chance of inheriting the disease.

Though Pam was found not to be a carrier, they learned that some mutations of the disease are not detected by the screening. They chose to go ahead with the procedures.

At the time, those procedures cost upwards of $15,000. None of it was covered by health insurance, and the Hildebrandts had to borrow the money from family members. "We figured if it didn't work the first time, we probably couldn't afford to do it again," says Brad, who works as an industrial designer. "Some of the couples we met were on their third or fourth try. There was no way we could afford that."

Photos: Your miracle babies
Parents who have struggled with fertility issues share stories of their children

The process only added to their anxieties. The sperm aspiration was a success, as was the retrieval of Pam's eggs. But aspirated sperm are not as mature, and therefore not as strong. And retrieved eggs quickly begin to die off. Ultimately, the insemination technique is a calculation of how many fertilized eggs will survive, if any. "It was nerve-racking," says Pam. "We had gone through this whole procedure and only three eggs made it through." Those three fertilized eggs were implanted, and the wait began.

An ultrasound soon revealed Pam was pregnant with twins.

The decision to have children is not one the Hildebrandts dwell on. Asked whether she had considered the fact that she could one day be a single parent raising her children, Pam responds, "Not really. I don't think about it. He's healthy. We live day to day."

Dr. Bruce Marshall, vice president of clinical affairs with the Cystic Fibrosis Foundation in Bethesda, Md., says the foundation, whose work has been critical in advancing life expectancy for CF adults, does counsel adult patients on the decision to have children: "We remind them of the great rewards of child-rearing, but also remind them that they may not live to see their children full grown."

Watching the two Hildebrandt children play after games, it's clear they've inherited their father's athleticism. Bradley looks to be a baseball star in the making.

Thankfully, the inheritance stops there. Neither child has CF. Even that welcome news was prefaced by some apprehension: “When Sadie was about a year old,” recalls Pam “she started having a lot of colds, and we knew we had to get them tested for our own peace of mind.”

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