Every year, 100,000 babies don't make it to their first birthday because of CHD.
Brink Matthew Ansell | Heart Warrior of the Week

Brink Matthew Ansell was born on July 20th, 2016. Like so many others, Brink’s parents were overjoyed about the addition to their family; spending time loving on their healthy and happy baby boy. However, their elation would soon turn to worry and heartache when Brink’s health took a turn for the worse at 2.5 months old. He started getting very sick, so sick that they were taking him to the doctor almost every week with some new illness or complication. He got very sick at 3 months old so they took him to the ER, knowing in their hearts that something was very wrong with their son. Doctors were quick to diagnose Brink with pneumonia; Mom and Dad were uneasy about this diagnosis but they were sent home after 6 days in the hospital. They would later find out that doctors missed the fact that he had an enlarged heart and was having breathing issues because it was so big that it was pressing against his lungs. Three months later the same sickness continued and progressed so Brink’s Dad took him to the ER and demanded a CT scan. They were met with resistance at first, but doctors finally obliged after he insisted 4 times. This is where they discovered Brink had anomalous left coronary artery from the pulmonary artery (ALCAPA).

Brink was quickly scheduled for open-heart surgery to repair his tiny heart. His surgeon detached the left coronary artery from the pulmonary artery and stitched it into the correct position on the aorta. They also tightened his mitral valve from the damage of his diagnosis. As a result of his CHD, Brink has undergone one open-heart surgery, he has spent approximately 3 months in the hospital and will likely have to take Enalapril – a medication used to treat high blood pressure and heart failure – for the rest of his life. He also doesn’t do well in high altitudes and can’t spend a lot of time around other kids due to the fact that he gets sick very easily. A sickness that would normally come and go in a few days’ time for most kids could be life-threatening for him.

Brink will have to undergo a sedated MRI next month to check on the repair that was done and to see how everything is functioning, but his parents are hopeful that he will not have to undergo anymore surgeries in the future.

chd awareness, chd, congenital heart disease

Brink’s Mom, Hilary, says that he is resilient, sweet, hungry (he’s always eating!), and that he is a miracle and a gift. She says the following about their long road with congenital heart disease:

I think all CHD families can agree that these kids are resilient. It is truly amazing to see how even when he was at his sickest, he still had such a positive and happy spirit about him. His heart was failing yet we were laughing and playing in the CTICU room up until the night before his surgery. I know God has a great purpose for his life and I hope that his story can touch many lives

Through this experience, we learned to trust that gut feeling if something doesn’t feel right, or if you don’t think your child is getting the care they need. He was already 6 months old, so who knows how much more his little heart could have handled. After the diagnosis, we chose to be transferred to CHLA, being that it is such a specialized hospital. Our cardiologist got us in with Dr. Vaughn Starnes, which was a miracle in itself. We experienced the best care and were empowered  to have a voice in our child’s care by the the staff at CHLA. I wish we would have pushed for more tests when he was 3 months old, but you can’t go back so I hope that other people can learn from our story. It’s a miracle to see the progress that Brink has made, Doctors have been amazed with it as well. They say with the damage it had, his heart has recovered remarkably well. I know God gave us a miracle in our son’s life and I know his story will be used for good.

About Brink’s CHD – ALCAPA

Physiology: The left coronary artery (LCA), which carries blood to the heart muscle, begins from the pulmonary artery instead of the aorta.

Complications: In a normal heart, the LCA originates from the aorta and it supplies oxygen-rich blood to the heart muscle itself on the left side of the heart. Because of the misplaced LCA in ALCAPA, blood that is lacking in oxygen is carried to the heart muscle. Therefore, the heart muscle does not get enough oxygen and the tissue begins to die because of it. This can cause a heart attack in the baby.

Symptoms: Crying or sweating during feeding, irritability, pale skin, poor feeding, rapid breathing, pain or distress in the baby (often mistaken for colic), irregular heartbeat, enlarged heart.

Treatment: Open-heart surgery is needed to correct ALCAPA. Only one surgery is needed in most cases, but if the mitral valve is seriously damaged from decreased oxygen, the baby may also need surgery to repair or replace the valve. A heart transplant can also be done in cases where the baby's heart is severely damaged due to lack of oxygen.

Prevalence: ALCAPA accounts for approximately 0.25-0.5% of all cases of congenital heart disease, occurring in about 2-5 out of every 100,000 live births.

January 12, 2018 by Lani O'Gorman

Comments

Sindi

Sindi said:

Glad to see Brink is doing well ?
Fellow ALCAPA Mom

'grandma Sherry

'grandma Sherry said:

Oh, Brink, Oh Hilary and Matt, thank you for listening so deeply through your faith to your inner knowing and calling on it to stand up for your son. may Sharing brink’s story give other parents the strength and courage to do the same deep listening and advocacy for their children—our children!

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