In 2019, Jessica and Dan Roomberg lost their beloved 17-month-old daughter to a rare manifestation of NF1. A happy and vibrant child, Mila was diagnosed with mid-aortic syndrome, a rare condition that narrows the middle of the aorta, causing decreased blood flow to the lower limbs. She was also diagnosed with renovascular hypertension, which caused poor blood flow to her kidneys. Both conditions resulted in high blood pressure and would require surgery, with Mila relying on blood pressure medications that didn’t really help in the interim. Eventually, despite a successful 8-hour surgery to bypass her aorta and revascularize her kidneys, Mila developed complications and passed away the following day. (Click here to read more about Mila’s NF journey.)
Faced with a reality that every parent fears, Jessica and Dan decided to channel their grief into something that could help kids like Mila. They founded the Magical Mila Foundation, a nonprofit dedicated to generating awareness for non-oncological NF while also focusing on the proper detection of high blood pressure in high risk infants and toddlers. One thing that had become apparent during their journey with Mila was that blood pressure readings were challenging to obtain from very young children due to technology limitations and clinical difficulties. This often led to inconsistency in observation, incorrect readings, or even in some cases, a lack of readings that might have affected evaluation or treatment. Jessica and Dan set out to make a difference in their daughter’s name.
They reached out to two of Mila’s doctors at Children’s Hospital of Philadelphia (CHOP), Dr. Rachel Hachen, Medical Director of the Neurofibromatosis Program, and Dr. Kevin Meyers, Director of the Hypertension Clinic. Together, the four came up with a collective goal of creating and implementing a consistent standard of care for measuring and monitoring hypertension in high-risk kids under the age of three, including guidelines on when and how blood pressure should be taken.
“The taking of blood pressure has historically been problematic,” said Dr. Meyers of the challenge before them. “You need to have a child that is quiet, so even in children over three there are issues. One of the biggest problems we have is that if it's measured at all, it’s measured in the leg, and if there is blockage or narrowing of the aorta you get an incorrect impression.” It was clear that a cultural shift at all levels would need to occur, re-education and changes to commonly held practices, and an audit of whether or not the best available equipment was being used.
In the year and a half since the “BP Under 3” initiative was launched, the Magical Mila Foundation has purchased alternative blood pressure equipment that the team has validated and approved for use at CHOP in children under the age of three, produced educational materials, including a video showing how to properly obtain BP in very young children, and more. Jessica and Dan are also working with Dr. Meyers and Dr. Hachen on an algorithm that alerts physicians of follow up steps to take when kids have high BP and a web site they hope will lead to a registry that increases the level of care for kids with hypertension. 
Though the “BP Under 3” program is still in its early stages, their work is already yielding results. According to Dr. Meyers, when looking into primary care they found that less than two percent of children who should have had their blood pressure taken had actually had it done. That number has increased to 15 percent since last November and is climbing, as the group continues to heighten awareness and implementation in primary care, while expanding into subspecialty care.
Dr. Meyers highlights the importance of the program for kids with kidney disease, especially chronic kidney disease and other diseases that cause hypertension and a narrowing of renal arteries. The new standard of care will also be critical for kids with a number of other conditions such as Turner syndrome, Williams syndrome, congenital heart disease, transplant patients, premature children who feed through stomach tubes and are at increased risk for high blood pressure, and more. For kids battling NF, blood pressure issues are not as visible or common as other symptoms, so the team also wants to shed light on this underrecognized symptom. The prevalence of BP issues in the NF community is well-established and has different causes, but this may not be known by all healthcare providers and monitored appropriately.
Dr. Meyers, Dr. Hachen, and the Roombergs hope to work with the American Academy of Pediatrics in the future, to ensure that the infrastructure and road map they are creating for how blood pressure should be obtained and monitored in children under three reaches as many medical professionals as possible. “We’re doing this in a very deliberate, intentional, slow way because the ultimate goal is that it be sustainable. There will be continuity, which means it has to be built on a strong foundation that supports itself down the line,” says Dr. Hachen.
With “BP Under 3,” Dan and Jessica see a way to help kids with rare diseases like Mila, while honoring their little girl who brought them so much joy. “We won’t stop until this is universal– this is our forever way of parenting Mila,” Jessica says. “We are hoping to work with the American Academy of Pediatrics to eventually branch out into other hospitals and raise more awareness of the difficulties in obtaining a correct blood pressure for children under the age of three. We think of continuing to fight for Mila as her way of growing up. This is our way of keeping her with us forever. We won’t stop until the world knows her.”
For more information about BP Under 3 and the Magical Mila Foundation, visit magicalmilafoundation.org.
(Click the poster to view a full-size and downloadable version.)
