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For many women, the biggest hurdle they face is simply getting pregnant and carrying to term. For Sarah Shaffer, her greatest hardship—and her family’s—started after her pregnancy concluded, with the complication-free birth of her second child, a son named Mason.
Shaffer and her husband Marc realized very quickly that something wasn’t quite right with their newborn son, who came into the world in March 2009. Mason began suffering from seizures just four days into his life and had to endure several tests, pokes and prods—including multiple attempts at a spinal tap—only to have the findings prove inconclusive.
Mason’s story got worse before it got better. Just weeks old, he contracted a severe respiratory virus, and then struggled with breathing problems. What’s more, based on his response to visual stimuli, his parents had reason to believe his eyesight was weak, and he was unable to lift his head or perform the mini-pushups that suggest a healthy, thriving infant.
“We just had no idea what was going on,” says Sarah Shaffer. The testing and monitoring of Mason’s condition continued.
In August, during an appointment with pediatrician Dr. Louis Giangiulio to address Mason’s persistent reflux, the Shaffers learned that their son’s seemingly distended belly was caused by an enlarged spleen. During a follow-up ultrasound and blood work, tests showed Mason had a dangerously high white-blood-cell count, and he was “express admitted” to the hematology/oncology unit at Alfred I. duPont Hospital for Children in Wilmington, Del.
“We thought it could be cancer, or it could be some once-in-a-lifetime genetic disease,” says Sarah, whose family lives in Lansdowne. “I said to my husband, ‘I don’t know what this is, but it’s not good.’”
To the family’s horror, a preliminary diagnosis suggested leukemia. Further tests confirmed that Mason had a very rare and potentially fatal condition known as malignant infantile osteopetrosis (MIOP), which is characterized by improperly functioning bone marrow. The result is dense but brittle bones that are prone to fracturing and infection. Other symptoms include compression of the nerves in the skull, which can lead to visual and hearing impairments, as well as intense pain and headaches, an enlarged liver and spleen (which are trying to “make up” for the bone marrow), and, generally, a failure to thrive.
The Shaffers learned that the only cure for osteopetrosis is a bone marrow or stem cell transplant. Although none of Mason’s immediate family members were potential matches, three perfect stem-cell matches were found. The source: publicly donated cord blood harvested from the umbilical cords of mothers who recently gave birth. Cord blood is a rich source of “noncontroversial” stem cells, and is essentially a byproduct of birth that gets discarded as medical waste.
“If someone’s cord blood is deemed viable for transplants, it goes into the national donor program registry, so if you need cord blood you go to the National Marrow Donor Program,” Sarah says. “If someone had not [donated cord blood], Mason would not have been saved.
“At the time there was not a single hospital in Philadelphia area, and we decided that was unacceptable,” she continues. “Mason was in agonizing pain throughout this. We decided then, with our child lying there, recovering, that we would let him go through this for nothing.”
True to her words, she and her husband started a support network for families with children stricken with MIOP known as the Mason Shaffer Foundation (MasonShafferFoundation.org). It has since grown into a collaborative effort at Main Line Health, offering expectant mothers delivering at Lankenau Medical Center and Bryn Mawr Hospital the opportunity to publicly bank their babies’ cord blood. Plans are underway to expand the service to Paoli and Riddle hospitals.
“As of July 4 we’ll have over 200 donations,” says Sarah, who runs the foundation and also works as a full-time medical social worker. “Volume-wise, 66 percent of donations are able to be banked, but even the cords that are not able to be used for transplants can be used for research. … We call it ‘liquid gold’; it’s ridiculous what it can do.”
Incidentally, Mason is now cured of the condition. He’s “a little small,” according to Sarah, but otherwise he’s a “normal, crazy 2-year-old” who recently moved up to toddler class in preschool.
Fertile Ground
While hospitals such as the ones mentioned previously are busy trying to save lives, many medical professionals are hard work trying to start them. Local fertility specialists continue to find new technologically equipped methods for helping local women become mothers. At the same time, nontraditional fertility treatments such as acupuncture are gaining acceptance in the United States after years of being considered conventional and highly effective elsewhere.
“People in the United States know of acupuncture for pain, but it’s also very helpful for treating fertility issues,” says Don Liu, medical director for Main Line Acupuncture and Oriental Medicine, which is based in Ardmore. “This treatment has been going on in China for thousands of years … but now more and more, people here are beginning to see that it might be a good way [to treat fertility issues] and not just an ‘alternative’ way.”
Liu estimates that acupuncture, in combination with a prescribed mix of Chinese herbs based on each patient’s individual evaluation, helps about “90 percent of patient conditions” as it relates to fertility, either by correcting hormone imbalances in the body or simply by alleviating the stresses of modern life. As a result, the body calms and becomes a more nourishing place for eggs and developing embryos, according to Liu.
Liu treats approximately 10 fertility patients a week using acupuncture, compared to an average of 70 a day in China. One patient, “Maria,” had undergone several traditional fertility treatments, including in-vitro fertilization, without success because she was told her eggs were too old. Through acupuncture, which led to her body being more “regulated and optimized,” she conceived within her first month of treatment and gave birth to her baby in January 2009.
“When I started this treatment [for fertility issues] many years ago, I was amazed by how much change it can bring a patient,” he says. “Pain management can make people feel better, but with fertility, it’s a life-changing thing.”
Even though acupuncture is typically less expensive and less invasive than other fertility treatments, insurance doesn’t cover it, thereby limiting its widespread acceptance. Furthermore, according to Liu, most American family doctors and fertility doctors do not recommend acupuncture because they do not fully understand its benefits. Based on his experience, however, this imbalance is slowly but steadily shifting.
