Sara S.
Pennsylvania
Birth Date - July 12, 1999
Main Diagnosis - pulmonary hypertension
THEME: TRAVEL DESTINATIONS (Including USA and WORLD landmarks)
Quilt Deadline:7/1/2014
Sara's Story
Sara was a full-term baby who was sent home after the pediatrician at the hospital declared her perfectly healthy. Everything was normal – she reached all of her milestones on time – and we had no indication that anything was wrong for the first six years of her life. In November 2005, Sara started having what appeared to be either fainting spells or seizures. Her pediatrician had us take her to a variety of specialists, and she was first (incorrectly) diagnosed with epilepsy, and then was correctly diagnosed with primary pulmonary hypertension (PH) in January of 2006. Pulmonary hypertension is a rare lung disease that has no cure. It also affects the right side of the heart and can lead to right heart failure if it is not treated. It is a progressive disease and a patient can go from being relatively healthy to deathly ill with very little warning.
Even after receiving treatment for her PH, Sara continued to have what the doctors referred to as “episodes” (but her father and I were positive that they were seizures). We took her to see a pediatric neurologist and she started taking anti-seizure medications. The short version of the story is that Sara’s seizures still continued and got worse over time, to the point where she was having seizures on a daily basis when she was 11. She also was having a lot of trouble with her PH, and she was to the point where she couldn’t walk across the room without having to sit down from being out of breath. Sara had a really bad seizure while she was being treated at the Children’s Hospital of Philadelphia (CHOP), which is where she is treated for her pulmonary hypertension, and the emergency anti-seizure medications she was given caused her to go into cardiac arrest. Thankfully, the doctors were able to revive her, but they were confused and spent the next 6 weeks trying to figure out why Sara was having seizures that didn’t seem to be epileptic in nature. They eventually came up with a correct secondary diagnosis – ectopic atrial tachycardia (EAT) – which essentially means that Sara’s heart was beating much too quickly while she was at rest (that’s what was causing the seizures). Once Sara was placed on the correct medications to control her heart rate, she started to feel much better and the seizures stopped. Her PH symptoms were lessened as well, and she started to feel better and be able to do more physically. The doctors at CHOP have started seeing a correlation between EAT and PH and Sara’s story has helped other children to avoid the years of seizures that she had to endure.
It has been 3 years since we almost lost Sara when she had that awful seizure at CHOP. While there is still no cure for PH, the medications she is currently taking seem to be keeping the disease from progressing and she is doing well and enjoying life. Sara is a high school freshman who earns straight As, plays the clarinet in the concert band, and is a ravenous reader who also loves to write. She is a huge fan of the BBC series Doctor Who, and she loves history, music, and learning about different parts of the world. She has chosen a travel theme for her quilt because she would love to see the world (especially England, Scotland, Ireland, Italy, Japan, Spain, and Canada) but is restricted from doing so by her PH (and by budget!). We live on the East coast and our travel has been limited to that area. We do make a yearly trip to the Outer Banks of North Carolina for a beach vacation, and that is one of Sara’s favorite things to do. She also attends a camp in Maryland that is for children who have PH or who have had a heart and/or lung transplant and her week at camp is the highlight of her summer. She is a happy-go-lucky kid with empathy beyond her years and her father and I are so proud that she has accomplished so much despite all that she has been though in her short 14 years (taking multiple medications on a daily basis, heart catheterizations, chest X-rays, ventilation and perfusion scans, echocardiograms, EKGs, pulmonary function tests, EEGs, exercise tolerance tests, monthly blood work, wearing holter monitors, long hospital stays and time away from her friends and school, the list goes on…). Sara is really looking forward to “seeing the world” through her quilt – thanks in advance to everyone who has a hand in making it!
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"Thank You"
Sara's quilt from Love Quilts arrived today! It actually made me cry when I opened it because it's so incredibly beautiful. You can feel the love that went into every stitch. The pictures truly don't do it justice. I can't wait to show it to Sara on Saturday!
