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.
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.
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.
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
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."
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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.”
Of course, raising children can be fraught with anxiety for any parent. But doing so while dealing with the physical and emotional complexities of a genetic disease like CF brings some unique challenges to the CF adult. "There has been an amazing shift in the demographic," says Marshall. "Nearly half the CF population are now adults. So it is not just a pediatric disease anymore. CF patients are doctors, firefighters and, as in Brad's case, softball players."
"Parent" is a small but growing category of the CF population. "We encourage our adult CF patients who are planning a family to have extensive support networks," says Marshall.
All in the family
The Hildebrandt's support network includes Brad's older sister Debra, who also has CF, and who at 48 is leading the family charge in defying the disease's statistical odds.
Debra, whose children are older than Brad's, also served as an inspiration for her younger brother. "When Pam and I were married, my sister already had one child. I thought 'If she can do it, why can't I?'"
Debra's experience was somewhat different. Adult women with CF have a thicker cervical mucus, generally making conception much more difficult.
"My doctor told me it would be very, very difficult for me to get pregnant, and if I did, even harder to carry the baby to term. And he warned me that my own health could be at risk."
Married in 1989 to her husband Peter, Debra did indeed get pregnant — on her honeymoon. Her doctor was more than a little surprised, as were some of Debra's peers. "Two other CF girls called me and asked me how I managed to get pregnant," Debra recalled.
Baby-making by the numbers"I kidded with them and told them 'You can't borrow my husband.'" Not everyone wanted to follow her example, however. "One girl (with CF) told me there was no way she was going to bring a baby into this world. She was very angry. She got a hysterectomy."
Debra successfully carried the baby to term, and a second three years later. Bryeanne, 17, is a world-class swimmer with her sights set on the next Olympics. Rachel, 14, is an accomplished athlete as well. Neither child has CF.
Like a lot of CF adults, Debra went through a period of doubt and depression. "They always say the first five years of a child's life are the formative years. After Bryeanne was born, I wanted to be around for that — at least long enough for her to remember me, and to know I loved her." She's had to revise that worthy goal several times since. "Now I want to be here through high school, college. I want to see my grandchildren."
Victory on and off the field
In Brad's case, the arrival of Bradley and Sadie served as a wake-up call. "He was very negligent with his treatments up until the kids came around," says Pam. Now he eats better and takes his vitamins, exercises and has a positive attitude."
Slight of build at 5 foot, 9 inches and 155 pounds, Brad, like all CF patients, has difficulty maintaining his weight. But he clearly keeps himself in superb condition. Marshall says physical conditioning "is one of the keys to combating CF and other chronic lung diseases. It's part of what we preach."
Not that doing so comes easily to the CF patient. The caloric intake requirements, the necessary enzyme and vitamin regimens, and the constant battles with fatigue are all factors with which CF patients must contend. And then there are the rigors of child rearing.
If Brad has anything even remotely close to a regret, it is this: "My father once told me 'There's no doubt in my mind you would have been a professional ballplayer if not for this disease.' The men in my family are all big. My brother is six-two, 220 pounds."
Still, you get the sense he's happy to settle for starring in a small town league, with his wife and two children among the team's supporters populating the bleachers.
On this night, the home team rallies for a tense, one-run victory. Watching Brad jog in from his familiar position in left field, it's easy to imagine him doing the same thing for a long time to come.
John Baiata is a senior editor and producer with NBC News.
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