My name is Crystal Trumper and one of the lucky mom’s to 3 year old Lily
Our lives with CHD began in December 2010. Though my wife, Jessica and I were unaware of it at the time, a little girl had just been born, who would undergo her first open-heart surgery at 7 days old, and who would soon find herself nestled in our hearts and our home.
We adopted Lily when she was 5 months old. We knew that she had Down syndrome and an AVSD (atrioventricular septal defect) which is quite common in children with Down syndrome (I think the number is close to 45% of kids with DS are born with a congenital heart defect and 35-40% of those have an AVSD specifically). Lily’s placement with us moved rather quickly, as her caseworkers wanted a family in place before her second open-heart surgery to complete the AVSD repair. During that surgery, we were shocked to hear that her surgeon had also diagnosed Lily with Pulmonary Vein Stenosis, a condition in which the pulmonary veins bringing oxygenated blood from the lungs to the heart narrow and can close up completely. In Lily’s case, the two left pulmonary veins have closed up completely and she has lost function of her left lung completely.
Lily’s recovery from her second surgery was complicated by a chylothorax and a couple of pleural effusions that didn’t want to clear up but she was finally released from Sick Kids after 33 days. Sadly, we were not meant to be at home for long. 5 days after we were released Lily suffered a cardiac arrest at home and was without vital signs for about 15 minutes. After being revived at our local hospital Lily was transported back to Sick Kids where we stayed for another month working through some new complications stemming from her cardiac arrest: a significant brain injury from the lack of oxygen, a cortical visual impairment, seizures, a g-tube and generally resetting Lily’s development back to that of a newborn.
We’re now 2.5 years past all of this and while there are certainly a stream of everyday challenges, Lily never ceases to amaze us. She is slowly learning all of her developmental skills over again, and while it’s taking longer this time around she is determined to master them. We’re also incredibly lucky and Lily’s heart and lung pressures have remained stable! Though words like, “unknown future” and “transplant” are always on our mind, we try not to get too wrapped up in trying to guess what will happen but just enjoy watching Lily grow.
Outside of my life of a heart mom, I’m a Community Recreation Programmer in the Parks, Forestry & Recreation Department of the City of Toronto. I work in the Aquatics unit and am lucky enough to get to spend my career hiring and training the lifeguards and swim instructors who work with kids of all ages and abilities at our pools. In my spare time I have an avid passion for photography and trying to spread a little awareness about Down syndrome, CHD and adoption on my personal blog Giggle & Hugs
Want to send Crystal a message? Email her directly at firstname.lastname@example.org