Emaleigh's Story

Emaleigh's CaringBridge Page can be found here.

Emaleigh was born at Virginia Baptist Hospital after only 28 weeks and 1 day of pregnancy on October 10th 2009 weighing 2 lbs 11 oz. Her stay in the NICU was for 79 days. She has a twin brother that is 1 minute older with no congenital syndromes. Abnormalities were discovered with Emaleigh’s feet during the standard second trimester ultrasound, although the extent of her malformations were not fully recognized until after birth. Unable to obtain a diagnosis, we began researching hospitals that specialized in Overgrowth disorders. After traveling to Boston Children’s Hospital in April of 2010, Emaleigh was officially diagnosed with CLOVES Syndrome.

In the summer of 2010, doctors began analyzing Emaleigh’s Overgrowth tissue by performing a surgery to remove a small lipoma (Non-Cancerous Soft Tissue). After the biopsy was performed, doctors were able to assess the risks for future tissue excising and decided on an “as needed” or “Medically Necessary” approach for future lipoma excisions. In November 2010, Emaleigh underwent her second surgery, Orthopedic in nature, lasting five hours. The primary purpose of the surgery was to help restructure Emaleigh’s feet to enable her to fit into shoes in order to help promote her ability to walk. In January 2011 Emaleigh underwent a full body MRI screening to eliminate the possibility of potential lesions, growths, or tissue problems (primarily in her chest cavity) while also evaluating the extensive overgrowth on her right buttock and leg. With a limited number of cases worldwide (approximately 50), doctors have few treatment options at this time. Fortunately, Emaleigh’s MRI was negative, other than a large left kidney. Doctors continue to monitor her growth and lipoma’s regularly.

November 14, 2011, Emaleigh will undergo her 3rd surgery, again, orthopedic in nature. We assumed this surgery would happen closer to the age of 8 but because her feet are growing rapidly, we need to move forward with this surgery, the "sooner the better". This surgery will remove all toes and metatarsals on "both" feet. They will also be removing some of the lipomatous tissue (fatty tumors) and moving the tendons to the bones that are left in the feet. Right now Emaleigh is in the same size shoe that a 6 year old child wears.

Moving forward we should expect the following treatments:
· Manage nutrition as needed (semi-annually)
· Adding a shoe lift for her leg length discrepancy (her left leg is 1” shorter)
· Debulking procedure on her right leg to reduce the lipomatous masses
· Surgery/Therapy to remove large veins in her right leg
· Debulk her right buttock
· Expect scoliosis surgery in the future, monitor for now (all is ok presently)
· Watch her left kidney, it’s already double the size of the right kidney and no longer protected by the ribcage (Absolutely NO contact sports…ever!)
· Growth plate manipulation to stop the bone growth in her right leg.
· Very vague foot surgery (we should expect additional debulking of her feet as she grows)
· Excision of the lipomatous mass and damaged right breast tissue

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