By Rachel Kytonen
As Rebecca Robinson and Dan Moritz watch their 19-month- old identical twin sons run around their home laughing and playing, they enjoy every minute—because they never know if that day with their sons will be their last.
Robinson and Moritz’s sons, Ethan and Evan Moritz, were born with a rare heart condition called Long QT Syndrome. Doctors tell them there are only 18 other known cases of Long QT Syndrome in the world, and Ethan and Evan are the only known identical twins with the diagnosis.
Long QT Syndrome is a heart rhythm condition caused by abnormalities in the heart’s electrical system. Long QT Syndrome is an inherited or acquired condition that may cause a fast, life-threatening heart rhythm (arrhythmia).
Robinson, of Cambridge, explained each time one of the boys’ hearts starts beating too fast, it’s shocked with an Implantable Cardioverter Defibrillator (ICD)/pacemaker that resets the heart beat. Otherwise the boys could go into sudden cardiac arrest.
“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.”
With Robinson needing to be at home to take care of Ethan and Evan, Moritz works 12-hour days. But the family could use financial help with medical bills and general household expenses.
A benefit for Ethan and Evan will be held Saturday, Jan. 21, from 5:30 to 7:30 p.m. at the Minneapolis Elk Lodge #44, 2875 Brookdale Drive, Brooklyn Park. A spaghetti dinner will be served with adults $10 and children $7. A silent auction will also take place during the benefit.
If you are unable to make it to the benefit but would like to make a financial contribution, a benefit account has been set up at any Wells Fargo Bank, under Ethan and Evan Benefit Fund.
Robinson explained around 13 weeks into her pregnancy she learned the twins had a two in 69 chance of having Down Syndrome. Doctors performed additional tests, and the odds became greater with a two in 10 chance the boys had Down Syndrome.
She later had an amniocentesis and learned she was at a high risk of miscarriage.
At the 26-week mark in her pregnancy, Robinson went in for a non-stress test at Methodist Hospital in St. Louis Park. When the doctors and nurses were listening to the heart monitors, they said it sounded like arrhythmia and decided to do an ultrasound. She learned Ethan had developed hydrops, where blood pools formed 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, doctors put Robinson on telemetry to monitor her heart rate as well as cardiac medication to treat the infants.
“The next morning I told the staff that Ethan hadn’t moved all night,” Robinson explained. “They did an ultrasound and told me Ethan wasn’t moving or breathing, and his heart was barely pumping.”
Ethan and Evan were born prematurely on May 28, 2010 by emergency c-section at Abbott Northwestern Hospital.
“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.”
After they were delivered, Ethan and Evan spent almost two months in the NICU unit at Children’s. They received pacemakers and began a regimen of medications to keep them stable. When they were finally able to go home they had a hard time sustaining and were diagnosed with failure to thrive. As a result they had another surgery to insert the feeding tubes.
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. They then had another surgery in August 2011 that cut a nerve on their left side to help their hearts. During that same stay at the Mayo, they also received ICN/pacemakers, and were at the Mayo for about three-and-a half weeks.
“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,” Robinson explained. “That really hit me because it’s exactly as it sounds—the boys have terminal illnesses.”
Robinson explained each night the boys are hooked up to oxygen and heart rate monitors that send information directly to the Mayo Clinic, and each night they are also hooked up to feeding tubes, as the boys still do not eat.
Robinson does have home care nurses to assist her with the boys’ regimen such as administering medications every couple of hours. The home care nurse usually arrives every morning around 5:45 a.m. since Robinson is usually up to 3 or 4 a.m. with the children. She said she is hoping eventually they can get a home care nurse for each of the boys. Ethan and Evan also have a therapist who comes to the home for occupational therapy.
“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.”
Robinson focuses on staying positive and strong for her sons.
“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.”
Moritz said he loves his kids’ smiles.
“I really focus on seeing them smile and I don’t try to think bad thoughts,” Moritz said. “I have faith in the doctors and hospitals and know we have the best doctors in the world thinking about our children.”
Robinson explained the family has been consulted by doctors in Italy and the Netherlands because the boys’ condition is so rare. She explained she even met one of the doctors from Italy when she attended a Long QT Syndrome Conference in Georgia with her aunt.
Even with everything they are going through, Robinson feels blessed.
“It’s hard and it’s unfortunate, but I wouldn’t trade them for anything in the world,” Robinson 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.”
Moritz said the boys remain happy, even during their clinic and hospital appointments.
“Even through all of this, our sons are some of the most happy children I’ve ever seen,” Moritz said. “Even in the hospital, they have a smile on their face and are happy and in good spirits.”