AlainaStrong
Donation protected
Meet Alaina Katherine Gravelle. Born a lively, cuddly, sweet baby girl on March 5, 2020. During her doctor’s initial health assessment a heart murmur was detected. Most heart murmurs detected at birth resolve themselves, but in Alaina’s case it did not. At 24 hours of age a critical congenital heart defect (CCHD) screening was performed. Alaina did not pass, so protocol dictated if the first screening resulted in a failure, then a follow-up screening be performed an hour later. The second go-around Alaina passed, but just barely. 48 hours following her birth, Alaina’s postpartum nurse continued to hear the murmur and expressed her concerns to the attending pediatrician. The abnormalities and concerns of the medical staff culminated with Alaina undergoing an echocardiogram. By early afternoon on her second day of life, Alaina was diagnosed with a series of four congenital heart defects (1. Pulmonary valve stenosis, 2. Ventricular septal defect, 3. Overriding aorta, and 4. Right ventricular hypertrophy). These defects are collectively known as Tetralogy of Fallot. Her prognosis for a normal, functional life would require surgical repair before her first birthday.
Alaina’s birth, diagnosis, and monitoring have coincided with the increasing concern of the pandemic. During her first months of life, protective measures were put in place worldwide to “flatten the curve” and reduce the spread of COVID 19. The recommended guidelines of quarantine and masking were followed around Alaina to reduce as many risks as possible of her contracting an illness; had she gotten sick, it would have potentially resulted in an additional 4 to 6 weeks wait for surgery. Both of Alaina’s parents, Tristyn and Aaron, diligently followed the doctors’ orders and guidance. They ensured Alaina was scheduled for all of her specialist and routine new-baby appointments, and even traveled several hours on multiple occasions for continued screening of her heart condition. By the time of Alaina’s first cardiologist appointment the hospital already had visitor restrictions in place. As a result of the ongoing pandemic, only Alaina’s Mama, Tristyn, was allowed to accompany her in the hospital for her appointments. Aaron waited in the car and joined the appointments via Facetime; it was unconventional given Alaina’s condition, but they made it work. In addition, they persistently monitored Alaina’s heart rate and blood-oxygen levels while she slept at night to ensure they remained within acceptable levels. Tristyn breastfed Alaina, and Alaina took to it like it was going out of style. All these measures and precautions have paid off, and Alaina has done incredibly well during this time leading up to surgery. Amazingly, she has met every single one of her developmental milestones! She was even at the ideal size for surgery by the time she was 8 weeks old.
Alaina recently surpassed 6 months of age. She keeps Tristyn and Aaron at the top of their game with her energetic and lively spirit. She has not allowed her condition to slow her down, but even with her tenacity, a normal life for Alaina means surgery is inevitable. So now, the day we have anxiously been waiting for has finally come. Alaina’s surgery is scheduled for September 17th at the Children’s Hospital of Philadelphia (CHOP). The focus of the surgery is to repair two of the four defects, the pulmonary valve stenosis and ventricle septal defects, which in turn will correct the remaining two. Tristyn and Aaron brought Alaina to CHOP in Philadelphia on September 14th and will stay through the duration of her surgery and hospitalized recovery time. Though the anxiety is high for those who love Alaina, her prospects of a full recovery are high.
Thank you for taking the time to read Alaina’s story and for the support and prayers already received. This GoFundMe was created with the desire to help this young family offset their current expenses and navigate the financial hurdles in their future. All donations, whether they be monetary or simply in thoughts and prayers, are truly appreciated.
Alaina’s Story, to be continued…
1 in 100 children are born with a CHD
Of those, 1 in 4 are considered critical
Tetralogy of Fallot is a critical congenital heart defect
For more information about Tetralogy of Fallot visit the following links:
https://www.marchofdimes.org/complications/congenital-heart-defects.aspx
https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/tetralogy-of-fallot
https://www.chop.edu/conditions-diseases/tetralogy-fallot?gclid=CjwKCAjw74b7BRA_EiwAF8yHFATkSb1nikqBEsS9iRjH8lP-dJX5vh0W7ik-QV8yIjPA-aqWJbRrdhoCVoUQAvD_BwE
Alaina’s birth, diagnosis, and monitoring have coincided with the increasing concern of the pandemic. During her first months of life, protective measures were put in place worldwide to “flatten the curve” and reduce the spread of COVID 19. The recommended guidelines of quarantine and masking were followed around Alaina to reduce as many risks as possible of her contracting an illness; had she gotten sick, it would have potentially resulted in an additional 4 to 6 weeks wait for surgery. Both of Alaina’s parents, Tristyn and Aaron, diligently followed the doctors’ orders and guidance. They ensured Alaina was scheduled for all of her specialist and routine new-baby appointments, and even traveled several hours on multiple occasions for continued screening of her heart condition. By the time of Alaina’s first cardiologist appointment the hospital already had visitor restrictions in place. As a result of the ongoing pandemic, only Alaina’s Mama, Tristyn, was allowed to accompany her in the hospital for her appointments. Aaron waited in the car and joined the appointments via Facetime; it was unconventional given Alaina’s condition, but they made it work. In addition, they persistently monitored Alaina’s heart rate and blood-oxygen levels while she slept at night to ensure they remained within acceptable levels. Tristyn breastfed Alaina, and Alaina took to it like it was going out of style. All these measures and precautions have paid off, and Alaina has done incredibly well during this time leading up to surgery. Amazingly, she has met every single one of her developmental milestones! She was even at the ideal size for surgery by the time she was 8 weeks old.
Alaina recently surpassed 6 months of age. She keeps Tristyn and Aaron at the top of their game with her energetic and lively spirit. She has not allowed her condition to slow her down, but even with her tenacity, a normal life for Alaina means surgery is inevitable. So now, the day we have anxiously been waiting for has finally come. Alaina’s surgery is scheduled for September 17th at the Children’s Hospital of Philadelphia (CHOP). The focus of the surgery is to repair two of the four defects, the pulmonary valve stenosis and ventricle septal defects, which in turn will correct the remaining two. Tristyn and Aaron brought Alaina to CHOP in Philadelphia on September 14th and will stay through the duration of her surgery and hospitalized recovery time. Though the anxiety is high for those who love Alaina, her prospects of a full recovery are high.
Thank you for taking the time to read Alaina’s story and for the support and prayers already received. This GoFundMe was created with the desire to help this young family offset their current expenses and navigate the financial hurdles in their future. All donations, whether they be monetary or simply in thoughts and prayers, are truly appreciated.
Alaina’s Story, to be continued…
1 in 100 children are born with a CHD
Of those, 1 in 4 are considered critical
Tetralogy of Fallot is a critical congenital heart defect
For more information about Tetralogy of Fallot visit the following links:
https://www.marchofdimes.org/complications/congenital-heart-defects.aspx
https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/tetralogy-of-fallot
https://www.chop.edu/conditions-diseases/tetralogy-fallot?gclid=CjwKCAjw74b7BRA_EiwAF8yHFATkSb1nikqBEsS9iRjH8lP-dJX5vh0W7ik-QV8yIjPA-aqWJbRrdhoCVoUQAvD_BwE
Organizer and beneficiary
Katherine Koller
Organizer
Charles Town, WV
Aaron Gravelle
Beneficiary