For Rebecca Robinson and Dan Moritz every day they spend with their twins, 19 month old Evan and Ethan, is a precious one as the parents never know what tragedy the next day could bring. Suffering from a rare heart condition from birth, the boys are the only twins in the world with the syndrome that makes their heart beat too fast.
Ethan and Evan Moritz were born with Long QT Syndrome. It is a condition which causes the heart to beat too fast and each episode can be life threatening. According to doctors there are only 18 other recorded cases and the identical twins are the only twins in the world where both have the condition.
The syndrome is caused by the heart’s electrical system. It is an inherited or acquired condition that may cause a fast, life-threatening heart rhythm (arrhythmia).
Rebecca says that whenever any of the boys’ heart starts beating too fast it is shocked with an Implantable Cardioverter Defibrillator (ICD)/pacemaker that resets the heart beat. If this was not done the boy would experience immediate cardiac arrest. The family has already experienced hundreds of them.
“Each one of these episodes are life-threatening and we’ve had hundreds and hundreds since the boys were born,” Robinson explained. “Most of the children diagnosed with Long QT Syndrome don’t live past the age of 1. The boy’s first birthday was very emotional for me because we had made it a year. The doctors won’t say anything to us about life expectancy.”
Rebecca was 13 weeks pregnant when she was first learned there were issues. Doctors told her that her babies had two in 69 chance of having Down Syndrome. Additional tests upped the risk to two in ten chances. She later had an amniocentesis and learned she was at a high risk of miscarriage.
At 26 weeks during a non-stress test doctors found that the hearts of the babies were beating too fast. They said it sounded like arrhythmia and decided to do an ultrasound. That is when it was revealed that Ethan had developed hydrops, where blood pools form around the abdomen because the heart was contracting very quickly and then slowly.
“The heart was pumping so fast it wasn’t pushing the blood away; it wasn’t doing a full pump,” Robinson explained. “The next day things hadn’t improved so they sent me to Abbott Northwestern Hospital, where I would stay until the babies were born.”
At Abbott Rebecca was put on telemetry to monitor her heart rate and the babies were given heart medication in utero. But Ethan had not moved all night and an ultrasound showed his heart was barely pumping.
Rebecca was immediately taken for an emergency C-section where she delivered Ethan and Evan prematurely on May 28, 2010.
“When Ethan came out he didn’t cry and the doctors wouldn’t even let me glance at him,” Robinson said. “When Evan came out I heard him cry, and then they both were rushed to Children’s Hospital in Minneapolis. Ethan needed to be resuscitated in the tunnel on the way to Children’s.”
The twins spent the next two months at the hospital’s NICU unit. They were both given pacemakers and intensive medication. Just after they were released home both boys were diagnosed with failure to thrive. The two were again operated on and feeding tubes were inserted.
In the twins’ first year, they were hospitalized over seven times for various reasons, and in July 2011, the twins started getting treatment at Mayo Clinic in Rochester with Dr. Michael Ackerman becoming their primary doctor.
In August 2011 a nerve on their left side was cut to help the heart. They were also given the ICD/Pacemaker.
“During one of my visits at Children’s, a lady gave me a piece of paper with information on it about a mother’s support group with terminal illnesses,” Rebecca said. “That really hit me because it’s exactly as it sounds—the boys have terminal illnesses.”
The boys are at home and their crossing the one year mark is a major milestone. Each night they hooked up to oxygen and heart rate monitors that send information directly to the Mayo Clinic. They are also fed through feeding tubes even now.
Each morning a home care nurse arrives at around 5:45 to help Rebecca taking care of the babies and administer their medications every 2 hours. Her husband works more than 12 hours on his job to take care of the family and the increasing medical expenses.
Rebecca hopes that she will someday have individual nurses for the twins.
“It got to the point when I couldn’t stay awake all day,” Robinson said. “I’m really thankful we’ve been able to have a home care nurse help us this past year.”
But it is the boys that help Rebecca stay positive.
“My sons really get me through each day,” she said. “The smiles on their faces and their running around. The little moments when they cuddle with you are special. I try not to dwell on the future and what may happen.
“I focus on each day and what needs to be done each day. Typically parents think about their kids’ future and what they may be when they grow up and get married and have grandchildren. The doctors tell us we just need to get through today.”
Dan adds,
“I really focus on seeing them smile and I don’t try to think bad thoughts. I have faith in the doctors and hospitals and know we have the best doctors in the world thinking about our children.”
As the boys’ condition is so rare, doctors from other countries like Italy and Netherlands have also taken an interest in their case.
“It’s hard and it’s unfortunate, but I wouldn’t trade them for anything in the world,” Rebecca said. “I wish they didn’t have this condition, but I’m hopeful to see them grow up and become young men. Our family has been a good support system.”
“Even through all of this, our sons are some of the most happy children I’ve ever seen,” Dan said. “Even in the hospital, they have a smile on their face and are happy and in good spirits.”
A benefit is being planned for Ethan and Evan on Saturday, Jan. 21, to give the family some financial support.
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