Thanks to our Junior Heart Walk Honorees this year, Madison Dallies and Matthew Burchell! Here are their stories.
At a routine ultrasound showed there was a possible hole in Madison’s heart, in between her ventricles. A future level 2 ultrasound confirmed that she definitely had a hole in between the ventricles, but they believe there wasn’t any constriction at that time in her Pulmonary Artery. A month later, the doctor said that Madison’s congenital heart defect was worse than we thought and she was diagnosed with Tetralogy of Fallot—a rare condition of four heart birth defects at once.
Doctors said the constriction in her Pulmonary Artery was very severe and that she would need surgery to place a shunt within 24 hours of her birth.
On Monday April 14th at 3:04 PM, Madison was born and the surgery for her shunt placement would occur the very next morning at 7:30 AM.
Her mother said, “That night, I went and met my little girl for the first time. She is a fighter and the strongest person that I know. She was born with virtually no pulmonary artery opening, a large hole in between her ventricles, and an overriding aortic artery, which are 3 of the 4 conditions of Tetralogy of Fallot. The 4th condition is the thickening of the right ventricle wall, which has been occurring over time since she was born.”
Madison’s first surgery lasted almost 5 hours. They successfully placed a shunt to redirect the blood to the branches of her pulmonary artery from her aortic artery.
“Our first visit with her post-surgery was the scariest sight of my life. To see my baby with rows of machines behind a large hospital bed and know that all of those machines had medicine in them that was being pumped into my little girl, was terrifying. Six days after her birth, we got to hold our little girl for the first time. Six days after that, we took our precious miracle home,” said her mother.
They met with cardiologists monthly until her second surgery when she was eight months old. Madison’s six-hour surgery was successful and after 11 days in the hospital she finally went home.
They met with her surgeon every 6 months, then one-year visits because her constriction sounded and looked much better. This year, at her 8-year visit, her doctor has requested a Pulmonary Nuclear Lung Perfusion Scan performed to measure the output between the two branches of her pulmonary artery. They are working with her cardiologists now to tackle the next steps.
“Congenital heart defects can be a lifelong battle. I am very proud today to be able to say that I am the Mother of a Heart Warrior. She is my hero and I cannot imagine my world without her in it. Thank you to all of the work that the American Heart Association has done over the years to provide funding for research so that my little girl could still be here today,” said Madison’s mother.
At four months old, Matthew’s pediatrician believed he heard an “innocent heart murmur.”
An “innocent” murmur is considered harmless and would not require monitoring or intervention. The doctor was not overly concerned and indicated he would refer us to a pediatric cardiologist if he still heard the murmur at six months. I pushed for an immediate referral which he was more than happy to give.
On August 22, 2008, to his parents’ surprise, Matthew was diagnosed with two congenital heart defects: a bicuspid aortic valve with mild stenosis and a mildly dilated ascending aorta.
The aortic valve is the valve between the heart and the aorta which prevents the blood from flowing back into the heart. The aorta is the main artery which moves oxygen enriched blood throughout the body. A normal valve has three leaflets. A bicuspid valve only has two. A bicuspid valve can lead to stenosis (blockage) and regurgitation (back flow). His valve is also susceptible to bacterial infection.
The dilation of the ascending aorta has since progressed and is now considered a stable, thoracic aortic aneurysm.
An aneurysm is when the diameter of a portion of the artery is significantly larger than normal. An untreated aneurysm can lead to dissection or rupture, resulting in a catastrophic incident.
Matthew must be monitored annually to assess both the valve and aneurysm. Unfortunately, there is no medication that can fix either defect.
Matthew is now eight years old. He has not required surgical intervention to date and is not restricted from any day to day activities. He has, however been discouraged from participating in competitive activities such as football, weightlifting, hockey or wrestling which could cause trauma or straining. Physical restrictions may result as he ages and the dilation increases.
Statistically, one in 100 babies is born with a congenital heart defect. In Matthew’s case, boys are three times more likely to be diagnosed with a bicuspid valve than girls.
Approximately 80% of those with a bicuspid valve, also suffer from dilation of the aorta or an aneurysm.
Matthew is on a life-long journey. There is no quick fix. Diligent monitoring of his condition is a must and progression is inevitable.
In the future, any surgical intervention that Matthew will undergo will come with its own risks and maintenance.
That is why his parents support the American Heart Association. Because every day there is more research and studies being conducted that will one day help those like Matthew born with Congenital Heart Defects live their best lives possible.