Brinley’s Cardiac Fibroma Removal
Donation protected
A sweet little girl from La Ronge, Brinley Watt, diagnosed with a cardiac fibroma is now having to expect open heart surgery within the next several weeks. She is stable but may have to remain in hospital up until surgery. As per information shared below from Brinleys parents in February, they provide some background on her diagnosis. As it is still unknown on the status of referral for this surgery, we are wanting to help the family as much as possible as there will be expenses either way.
“In honour of yesterday being rare disease day, as well as February being ‘Heart Month’, we would like to share with you about Brinley. At 33 weeks pregnant with our second child, our unborn baby was diagnosed with a rare heart abnormality in utero during a non-routine growth ultrasound. We quickly relocated our lives to Edmonton, AB, 8 hours away from home, where we had routine scans and tests daily throughout the last few weeks of our pregnancy. No signs of any problems throughout, which led us to a natural delivery on October 3, 2018, and as planned, she was quickly transported to the Stollery Children’s Hospital to undergo an MRI, Echocardiogram and several other tests, where she was than confirmed with the diagnosis of a cardiac fibroma occupying majority of her left ventricle. Her stability was unknown due to the health professionals not knowing how her little heart would tolerate the tumor once she was out in the big world. 8 hours after giving birth, I quickly hopped on a transit to reunite with my baby girl, laying there oh so gently in the NICU, I sobbed as I got to hold her, intimidated by the uncertainty of our future together. As prepared, we were ready for the possibility of immediate heart surgery that could lead to removing half her heart or the enlistment for a heart transplant. As the hours passed by, so did the doctors, amazed by her stability. 72 hours later, the decision to carefully normalize her care was made, which meant less wires and tubes. Tears of joy fell as the doctor than allowed me to breastfeed my dear daughter, which is one of the greatest bonds a mother can feel to her baby. Over the next few months, we settled into our “new normal” lifestyle back in our home, which along came medication and an AED to take everywhere we go. Monthly trips to Saskatoon for monitoring, as well as a few precautionary trips to the Emergency Room and one emergency medi-vac led to a week long hospital stay in Saskatoon. Searching high and low for any positive answers for my daughters diagnosis, I than came across a mother from halfway across the world - our children’s diagnosis were similar and that is when we were recommended to reach out to Boston Children’s Hospital. In Boston, more specifically a certain surgeon, has performed a handful of successful cardiac fibroma resections, including the more complex versions. Our thoughts and hopes are to see Brinley get treated in Boston, it is unknown when, it could be tomorrow or it could be in the years to come. As we are hoping for the possibility of an out-of-country referral, we are preparing for the worst, which is for us to do whatever it takes to provide our fragile little baby with the best possible care she can get.
Cardiac Fibroma: The cardiac fibroma is a rare benign tumor of the heart that occurs in infants and children. There has only been about 200 cases ever recorded in medical literature. The ideal treatment for this diagnosis is surgical resection, but as there are already so few cases for the cardiac fibroma, Brinley’s fibroma is more complex as is occupying a large portion of the heart muscle in her left ventricle, a muscle in which cannot be damaged. “
“In honour of yesterday being rare disease day, as well as February being ‘Heart Month’, we would like to share with you about Brinley. At 33 weeks pregnant with our second child, our unborn baby was diagnosed with a rare heart abnormality in utero during a non-routine growth ultrasound. We quickly relocated our lives to Edmonton, AB, 8 hours away from home, where we had routine scans and tests daily throughout the last few weeks of our pregnancy. No signs of any problems throughout, which led us to a natural delivery on October 3, 2018, and as planned, she was quickly transported to the Stollery Children’s Hospital to undergo an MRI, Echocardiogram and several other tests, where she was than confirmed with the diagnosis of a cardiac fibroma occupying majority of her left ventricle. Her stability was unknown due to the health professionals not knowing how her little heart would tolerate the tumor once she was out in the big world. 8 hours after giving birth, I quickly hopped on a transit to reunite with my baby girl, laying there oh so gently in the NICU, I sobbed as I got to hold her, intimidated by the uncertainty of our future together. As prepared, we were ready for the possibility of immediate heart surgery that could lead to removing half her heart or the enlistment for a heart transplant. As the hours passed by, so did the doctors, amazed by her stability. 72 hours later, the decision to carefully normalize her care was made, which meant less wires and tubes. Tears of joy fell as the doctor than allowed me to breastfeed my dear daughter, which is one of the greatest bonds a mother can feel to her baby. Over the next few months, we settled into our “new normal” lifestyle back in our home, which along came medication and an AED to take everywhere we go. Monthly trips to Saskatoon for monitoring, as well as a few precautionary trips to the Emergency Room and one emergency medi-vac led to a week long hospital stay in Saskatoon. Searching high and low for any positive answers for my daughters diagnosis, I than came across a mother from halfway across the world - our children’s diagnosis were similar and that is when we were recommended to reach out to Boston Children’s Hospital. In Boston, more specifically a certain surgeon, has performed a handful of successful cardiac fibroma resections, including the more complex versions. Our thoughts and hopes are to see Brinley get treated in Boston, it is unknown when, it could be tomorrow or it could be in the years to come. As we are hoping for the possibility of an out-of-country referral, we are preparing for the worst, which is for us to do whatever it takes to provide our fragile little baby with the best possible care she can get.
Cardiac Fibroma: The cardiac fibroma is a rare benign tumor of the heart that occurs in infants and children. There has only been about 200 cases ever recorded in medical literature. The ideal treatment for this diagnosis is surgical resection, but as there are already so few cases for the cardiac fibroma, Brinley’s fibroma is more complex as is occupying a large portion of the heart muscle in her left ventricle, a muscle in which cannot be damaged. “
Organizer and beneficiary
Susan Wallace
Organizer
La Ronge, SK
Tia Watt
Beneficiary