Local toddler battles rare heart condition
Wednesday, 30 January 2013 11:47

17-month-old has congenital heart defect

 by Nicole Rodman

    Stanbrook resident Rebecca Larkins was 25 weeks pregnant with her fourth child when she learned the awful news.
    An ultrasound revealed that her unborn son was suffering from a rare congenital heart defect known as hypoplastic left heart syndrome.
    Just one in 100,000 babies are born with this condition each year.
    The syndrome occurs when the left side of the heart does not develop completely, effectively leaving the child with half a heart.
    Left untreated, the condition is fatal. Even after extensive treatment and surgery, many babies born with hypoplastic left heart syndrome do not survive long.
    As Larkins recalled in a phone interview last Wednesday, she was “completely devastated” to learn the news of her baby’s illness, especially after having had three perfectly healthy children previously.
    Though she was still reeling from the news, Larkins rejected doctors’ advice to terminate the pregnancy
    On Aug. 15, 2011, Larkins gave birth to her son, Anthony Michael Brethauer, at University of Maryland Medical Center.
    Though doctors told Larkins to take her baby home and wait for him to die, instead she had Anthony transferred to Children’s National Medical Center in Washington, D.C.
    Just days later, Anthony underwent his first open-heart surgery.
    As Larkins explained last week, the surgery was done in Anthony’s hospital room, as he was too weak and sick to be moved to the operating room.
  

 As Larkins and her family waited, they felt the building begin to shake. As Larkins and others in the waiting room began to panic, they realized what they were feeling was an earthquake.
    Luckily, Anthony’s doctor was from San Fransisco and finished the operation unfazed.
    After 23 days of living with Anthony in the hospital, lacking the funds even to buy food and gas, Larkins took her baby home.
    Once home, Anthony was put on methadone to help wean him off of the heavy medications used in the hospital.
    Standing helplessly by, Larkins watched her baby scream, cry and vomit regularly.
    Weeks later, Anthony was back in the hospital getting a catheter in his heart.
    Since open-heart surgery swells the heart, doctors were unable to close Anthony’s tiny chest right away, leaving it open for days while his heart healed.
    On Dec. 7, Anthony was back in the hospital for his second major surgery, a procedure to connect major blood vessels to his lungs.     
    Without this operation, Anthony would not be able to oxygenate his blood properly, leading to further complications and likely death.
    Though Anthony was discharged just four days before Christmas, he was soon in the hospital again suffering from respiratory failure.
    Now 17 months old, Anthony has been in and out of the hospital more than most adults.
    “Anthony’s life consists of cardiologist and pediatrician visits and [electrocardiograms],” Larkins commented.
    Today, Anthony has overcome many obstacles and is doing far better than doctors could have ever hoped. He is walking and talking and is a good size for his age.
    However, as Larkins points out, there are still many challenges that Anthony faces on a daily basis.
    He is shorter than other toddlers his age and eats mainly from a bottle, as longtime use of feeding tubes has affected his swallowing reflex.
    He also suffers from frequent night terrors, often screaming and crying in his sleep.
    While Larkins remains hopeful and optimistic, she is also realistic about Anthony’s future.
    “There is no life expectancy for these children,” Larkins explained, noting that just 20 years ago, Anthony would likely have died soon after birth.
    Larkins and her family are aware that, though Anthony is doing well now, his condition could take a turn for the worse at any time.
    “We always have to be ready to get a heart transplant or a pacemaker,” she explained. “He could have a stroke at any time.”
    If Anthony does eventually need a heart transplant, the odds of receiving one are not in his favor.
    While pediatric heart transplant surgery is improving (today, more than 70 percent of patients survive at least five years), finding a donor heart for an infant or small toddler remains a challenge.
    For now, however, Anthony seems to be doing just fine with the heart he has, though that may change at any time.
    While Anthony’s condition has taken an emotional toll on Larkins and her family, it has been a heavy financial burden as well.
    Larkins husband (from whom she is divorced) was fired during her pregnancy for missing too much work due to doctor’s appointments.
    With Larkins a full-time student and her husband unemployed, the couple was ill-prepared for the astronomical medical expenses related to Anthony’s care.
    With surgery and hospital costs skyrocketing well into the millions, Larkins found herself in a constant battle with her health insurance provider.
    Eventually, Anthony was accepted for Social Security Supplemental Security Income (SSI) benefits, as well as state insurance.
    Even with the SSI benefits and insurance, Larkins can barely afford the $2,300 a month for specialized formula or the out-of-pocket expenses for over-the-counter medications.
    Currently, she is saving up to purchase a $3,000 automated external defibrillator (AED) machine which could shock Anthony’s heart back to life if it should stop.
    According to Larkins, while doctors have told her the device is necessary for Anthony, insurance does not cover the AED.
    For Larkins, she is not seeking a handout.
    She does encourage anyone with experience organizing fundraisers who wants to help to contact her through her Facebook page, “One beat at a time! Anthony HLHS”, at https://www.facebook.com/
OneBeatAtATimeAnthonyHlhs.
    Instead, she simply seeks to inform others about a little-known condition that affects children  around the world.
    “Our town and community does not know enough about congenital heart defects,” she explained.
    In addition to her Facebook page, Larkins has contacted Baltimore Mayor Stephanie Rawlings-Blake and Maryland Gov. Martin O’Malley asking them to officially proclaim Congenital Heart Defect Awareness Week, which runs from Feb. 7 through Feb. 14.
    While her son’s condition may be rare, approximately 1 in 100 babies are born with some type of conjenital heart defect.
    Larkins urges everyone to donate blood frequently and sign up to become an organ donor.
    Though it is a sensitive subject, child organ donation is a vitally important way to help save the life of one of the thousands of children waiting (often in vain) for a new heart or other organ.
    Larkins also encourages those who are interested to donate to a heart-related charity.
    Organizations such as The Children’s Heart Foundation (http://www.childrensheartfoundation.org/) raise funds to further research into treatments (and, hopefully, a cure) for congenital heart defects.
    In the meantime, Larkins is optimistic that Anthony will be able to overcome his condition and continue to thrive.
    “There is hope for these babies,” she said, referring to children with hypoplastic left heart syndrome.
    For more information on Anthony’s condition, or to contact Rebecca Larkins,  visit Facebook at https://www.face
book.com/OneBeatAtA
TimeAnthonyHlhs.