The Miller sisters – Maggie, Jane and Samantha – manage their hemophilia with help from the Akron Children’s Hematology team.
Mindy and Geoff Miller of Uniontown have four kids. Three are girls, and they have the bleeding disorder called hemophilia. “Geoff has hemophilia, and we were always told there was a good chance he’d pass it along to our girls,” Mindy said. “They would be carriers, and their future sons could have hemophilia because their factor levels would be low.”
In hemophilia, a “factor” is a protein in the blood that ensures blood clots correctly. According to the National Bleeding Disorders Foundation, mild factor levels range from 6-30% and represent about one quarter of hemophilia cases. Moderate factor levels of 1-5% account for 15% of cases, and severe factor levels of less than 1% represent about 60% of cases.
Diagnosing Samantha
The Millers found out about their oldest daughter, Samantha, having hemophilia when she fell while learning to walk. “She hit her face really hard, and the little piece of skin by her upper lip wouldn’t stop bleeding,” Mindy recalled. “Then it developed a big hematoma [blood blister]. We took her to a hospital – not Akron Children’s initially. The doctors said there was nothing they could do and advised us to put cold packs or a bag of frozen vegetables on Samantha’s lip.”
Samantha looked OK when she went to bed. “The next morning, her crib sheets were covered in blood,” Mindy said. “We got Samantha cleaned up, and we headed to Akron Children’s Hospital.”
The emergency room doctor gathered details of the Millers’ family history and ran tests on Samantha. “They tested for leukemia, which was terrifying,” Mindy shared. “Then they checked her factor level because of Geoff’s history, and that’s how we discovered Samantha is a hemophilia carrier. She’s a factor of about 19.8%, so she’s mild.”
The Millers followed up with Akron Children’s Hematologist-Oncologist Stephanie Savelli, MD. “It was important to educate the family on bleeding risks and when to call the treatment team,” Dr. Savelli said. “This is an X-linked disorder, meaning it is condition caused by a gene in the X chromosome. Because fathers only have one X chromosome, they will always pass the affected chromosome to their daughters.”
Jane’s sisters; brother, Trey; and dog, Belle; gather for a photo before digging into Jane’s birthday cake.
Medical and social work support
In addition to Samantha, Mindy and Geoff have daughters Jane and Maggie and son Trey. The girls’ hemophilia is mild, and they do not have to take medicine. “We follow up every year with comprehensive visits at the Showers Family Center for Childhood Cancer and Blood Disorders,” Mindy said. “We started with Dr. Savelli and have seen different hematologists over the years. They’ve always been fantastic.”
In addition to comprehensive medical care, the Showers Center has social workers to help families navigate the challenges of a chronic condition. “I have seen the Millers ever since the girls have been diagnosed with hemophilia,” said Social Worker Doug Palmer. “I provided information regarding dental insurance and financial assistance programs as needed. I’ve also helped in giving them bleeding disorder resource information.”
The girls are learning to take a more active role in their health care. “Samantha is almost 15, and Jane is 13. The Hematology team is really trying to educate them and prepare them for when they’re responsible to handle their condition on their own,” Mindy said. “It’s good the girls have a team of Akron Children’s professionals teaching them.”
The Millers enjoyed a 2024 road trip out west, including Bear Lake in Rocky Mountain National Park.
The Miller sisters can receive care at the Showers Center until age 21, and then they’ll transfer to an adult provider. “As they get older, they will need to know the reproductive implications,” Dr. Savelli said. “Each of their sons will have a 50% chance of having hemophilia – and their daughters will have a 50% chance of being carriers.”
‘This is part of life on earth’
Mindy knows that not every family has pediatric-dedicated hemophilia resources so close to home. “Akron Children’s is a regional comprehensive hemophilia treatment center, and we live just 20 minutes away,” she said. “We feel blessed to have those resources nearby because we know a lot of people have to travel. I can also call the Hematology team anytime. They almost always answer their phones, which is so abnormal in this world. If they don’t answer, they call back quickly.”
Additional aspects of the girls’ medical care – including oral health and use of anesthesia other than local – are important to manage because of their hemophilia. But Mindy and Geoff take everything in stride. “We believe this is how God created the girls, and this is not by accident,” she said. “This is part of life on this earth. We’re just thankful to the whole Akron Children’s team for being so helpful.”
Learn more about the Showers Family Center for Childhood Cancer and Blood Disorders.
