by Dennis Dalman
From minute to minute, day to day, night after night, Amy Einhaus of Sartell worries terribly, always afraid her surviving baby twin, Luna, will take a turn for the worse.
Just one week ago, the 4-month-old baby stopped breathing one night and had to be rushed – once again –back to Children’s Hospital in Minneapolis where, thankfully, she was stabilized. Luna had been home from the hospital for only two days before she had to be rushed back on Oct. 14.
For months, the medical bills have been mounting. There will be a benefit for the family from 4-7 p.m. Sunday, Oct. 21, at Trobec’s Bar and Grill in St. Stephen. The event will feature a spaghetti feed with free-will donations and a silent auction.
Since late June, just weeks after the twins were born, Einhaus and her family have been enduring terrible pain, anguish and uncertainty.
On June 19, Einhaus gave birth to twins Lake William and Luna Cathryn, so-named because their mother liked the poetic combination of moon-and-water (Luna being Spanish for “moon.”) The birth was induced because doctors had noticed a build-up of fluid in the brain of Luna while in the womb and became concerned about the problem. Parents Amy and Richard Sadergaski were thrilled with the twins, who were both doing just fine as they took them back home to Sartell. However, six weeks later tragedy shattered their world when Amy checked Lake in his sleep one night and found him expired, a case of sudden-infant-death syndrome.
Lake was only 40 days old.
The emotional devastation for the parents was beyond words, as it was for their other daughters – Elle, 7; and Sawyer, 5.
“It was horrible,” Amy recalled. “I was almost very angry at God. Why? Why? Lake was so healthy. No problems at all. And then . . . “
Their bottomless grief was worsened by a slowly creeping worry about Luna’s well-being. Could something also happen to her, without even a warning?
Luna’s parents were determined to be pro-active, and Luna underwent a brain scan and ultrasound diagnostic exams. All seemed fine. But one day, ominous warnings began to happen. Her heart at times began to beat too fast, way too fast, up to 300 beats per minute. Richard and Amy hooked her up to a sensitive baby monitor. And the family all went to bed each night with a disturbing feeling of nervous dread.
“It was really scary,” Amy said.
Within a couple of weeks, another dreadful thing started happening to Luna: grand mal seizures, a series of them that just wouldn’t stop. And then, Luna quit breathing. She was rushed to St. Cloud Hospital, then transferred – again – to Children’s Hospital where she underwent an MRI.
The sandy-haired, blue-eyed Luna had suffered 40 seizures in just three days.
Later, the results of the MRI were released, and it was yet another terrible blow for the family – a diagnosis of lissencephaly.
The awful news, said Amy, was “like like being buried by a landslide.”
Lissencephaly is an extremely rare, gene-linked malformation of the brain. It is characterized by the absence of convolution folds in the cerebral cortex. As a result, neuron nerve cells do not “migrate” to the places within the brain as they are supposed to do. Luna, Amy said, has a very severe form of the condition. Some children do not make it past the first year of life.
Luna spent almost four weeks at Children’s Hospital, and doctors determined she would need feeding tubes because she was aspirating a lot of her food intake, meaning some was going to her stomach, some to her lungs. She was given a special formula, but one of the tubes (to her stomach) proved useless, and so the second tube (to her intestine) is now used.
Luna is often in pain. Musical therapy is a big help. Her parents play music softly while she is sleeping, and when she wakes up and listens, her eyes light up and a radiant smile appears on her face.
“Luna has been through so much in her short life,” Amy said. “She’s such a fighter. She’s such a gorgeous baby. We are grateful for every single day we have her because some don’t even make it to her age. I can’t explain the pain of having to bury her brother, Lake, but that makes us all the more grateful for still having Luna.”
To take care of Luna, Amy, who is 33, had to quit her job at Quality Appliance in Waite Park, a business owned by her parents. Richard, 36, works for W. Gohman Construction.
The past five months have been a constant emotional struggle for the twins’ family.
“Lake is with God,” Amy said. “This is all part of a bigger plan. I have strong faith in God, and that is such a help. People at our church (Celebration Lutheran in Sartell) are so amazing. They call; we pray; they give us strength in moments when we are sometimes super frustrated. It’s really hard, but you must be strong when you have no other choice.”
If people cannot make the Oct. 21 benefit at Trobec’s Bar and Grill, they can still donate via a gofundme site for Luna’s family. The site is gofundme.com/LunaCathryn.
Luna is held by her sister Elle with sister Sawyer snuggling close by.
Just two weeks old, the Harper-Sadergasky twins Lake (left) and Luna cuddle. Just four weeks later, Lake died in his sleep and Luna, now 4 months old, is battling a rare genetic malfunction.
Luna Harper-Sadergasky in a photo taken when she was 2 months old.
