OKLAHOMA CITY — A metro couple is suing a Massachusetts sperm bank after their son was born with a chronic disease.
Brian and Sharine Kretchmar are hoping their lawsuit will bring about tougher regulation of an industry that many say is largely self-regulated.
Jaxon Kretchmar looks and sounds like any other 2 year old.
He loves playing with his big brother, Tristan.
But his playful laughter is drowned out much of his days with the sound of breathing treatments.
He has to do them an hour and a half in the morning and an hour and a half at night.
He also wears a special vest that shakes him to loosen the mucus that builds up in his lungs.
Jaxon was born with cystic fibrosis, a genetic, chronic disease that affects the lungs and digestive system.
His parents were stunned by the diagnosis.
“We were shocked and devastated. Disbelief, could not believe it,” Brian Kretchmar said.
That’s because CF has to be passed on by both parents and the Kretchmars had used a sperm donor to conceive Jaxon.
Donor N-170 had supposedly been tested for cystic fibrosis.
“We were like, ‘They tested. They tested. There’s no way he has this,” Brian said.
After having their first son, the Kretchmars were unable to conceive and turned to the New England Cryogenic Center, or NECC, near Boston.
“We got on their website and were just kind of looking to see what they offered and liked what they said,” Brian said.
The website stated, “No specimen is released until the donor has been tested for the following diseases.” That list included cystic fibrosis.
But later tests revealed the donor carried two copies of one of the more serious CF mutations.
“As sick as it is to get a diagnosis, to think we’re probably victims of a bigger thing,” Sharine said.
The Kretchmars discovered donor N-170 was part of thousands of vials of sperm NECC purchased back in 1999 from another large sperm bank in Wyoming.
The Kretchmars’ attorney monitored NECC’s website after Jaxon’s birth and said, at one point in time, they put up a disclaimer stating, “Cystic fibrosis testing has not been done on donors with the prefix B, N and R.”
Their website now has a note under testing for cystic fibrosis stating, “Not all donors have been tested for the same number of CF mutations.”
“They say it’s like breathing through a straw on an average day, really by the time they’re teenagers,” Sharine said.
Jaxon’s days will always be filled with a litany of pills to ward off infections that could kill him.
“The life expectancy for him is not, I don’t know what it’s going to be if we’re going to outlive him or what,” Brian said.
But the Kretchmars do know they don’t want another family to have to go through what they’ve been through.
“We couldn’t protect him. I guess no parent can protect their child from everything. But you know, I mean, he needs to know there are people out there that do care and at least try to right the wrongs,” Sharine said.
A spokesperson for the New England Cryogenic Center said the paperwork that came with donor N-170 showed he tested negative for cystic fibrosis.
They say they stopped selling all sperm purchased from that other large bank immediately after hearing of Jaxon’s birth and now only use it for research.
They say no other babies conceived with donor N-170 have CF or any other problems.
Right now, the FDA only mandates that sperm banks test for infectious diseases, not genetic diseases.
There are groups lobbying to change this and to create more stringent regulation of the industry.