Two parents are suing a Pasadena fertility clinic, alleging it erroneously transferred an embryo that carried a genetic mutation for a rare and deadly stomach cancer – and then tried to cover it up.
Jason and Melissa Diaz say they specifically told Huntington Reproductive Center Fertility (HRC) that they did not want to pass along the mutation to their children. Despite that, they allege, Melissa Diaz gave birth to a baby boy with a mutation to the CDH1 gene as a result of the clinic’s actions, making it likely he will develop hereditary diffuse gastric cancer.
The family filed a separate arbitration claim of negligence in the wrongful transfer of the embryo. The lawsuit, specifically, claims HRC concealed information to customers, including that it has a “long history” of past mix-ups of genetic material and that its processes and procedures are insufficient to prevent such errors.
“I wouldn’t want anyone on Earth to experience this type of pain, and now I will be forced to watch my own son, my own flesh and blood, go through this after Melissa and I worked so hard to protect him,” a tearful Jason Diaz said during a news conference Wednesday.
In a written statement issued to NBC4, HRC said it stands by the “professionalism and expertise” of its medical staff and that it empathizes with the family.
“However, the patients associated with the case sought genetic testing and genetic counseling outside of HRC Fertility, and with an outside party; they wished to have a male embryo transferred, which we carried out according to the family’s explicit wishes and in accordance with the highest level of care,” the clinic wrote.
Hereditary diffuse cancer makes up only 1-3% of all stomach cancers and is difficult to detect, according to the National Cancer Institute. Doctors recommend people with the CDH1 mutation have their stomachs removed, which in turn causes lifelong symptoms. If the cancer spreads, treatment is more difficult and the five-year survival rate is less than 20%, according to the NCI.
Jason Diaz noted that he was diagnosed with cancer at age 32 in 2018 and had to have his stomach removed after chemotherapy didn’t work. Two of his aunts, he added, died of gastric cancer after being diagnosed in their forties.
The Diazes said they sought IVF treatment because both were genetically predisposed to cancers – Jason to stomach cancer and Melissa to breast and ovarian cancer through a mutation to the BRCA1 gene.
An egg-retrieval procedure from June 2020 produced five embryos, according to the lawsuit. An embryo report included in the lawsuit showed only one embryo did not have any of the mutations the Diazes were testing for. After that embryo was transferred, Melissa Diaz suffered an early miscarriage.
That prompted the couple to ask for another transfer.
According to the suit, their IVF coordinator told Melissa Diaz via email that one of the embryos had the BRCA1 mutation but not the stomach cancer-causing CDH1 mutation. Because the risk of the ovarian and breast cancer-causing mutation impacting a boy was “significantly” lower, Melissa Diaz said, the couple decided to have that embryo transferred next.
In reality, according to the lawsuit and a copy of the embryo report provided in the suit, none of the five embryos was a boy with the BRCA1 mutation but not the CDH1 mutation. That meant the second embryo transferred to Melissa Diaz was a boy who did have the mutation causing stomach cancer.
According to the suit, the couple only found out what had happened when their son was already about 10 months old, after Melissa Diaz began corresponding with another IVF coordinator about another possible embryo transfer or egg-retrieval procedure.
The second coordinator sent the mother a copy of the original embryo report, which showed the embryo that had been transferred was actually one with the stomach cancer mutation. The suit alleges the couple’s doctor knew they didn’t want to pass on the stomach cancer mutation but went ahead with the transfer anyway.
It also alleges that HRC later provided Melissa Diaz with another copy of the embryo report that – unlike the first report sent to the mother – excluded the embryo grading, sex and handwritten notes about which embryos had been transferred. This, according to the suit, was HRC’s attempt at covering up its mistake.
“It was shocking. My own medical provider changed my records. The fact that they tried to hide what they did by altering my records showed that they knew that had done something wrong,” Melissa Diaz said.
The couple is now dreading what the future may hold for their son, as well as the high costs associated with a stomach removal surgery.
The lawsuit notes that the boy has a more than 80% chance of developing the stomach cancer that runs in his family. If that happens and he has to have his stomach removed, he will “drastically” have to alter his eating habits and face ongoing nutrient deficiencies, chronic diarrhea and other lifelong difficulties that may prevent him from doing certain jobs or taking part in everyday activities.
“He’s just such a happy baby, and to know the hurt in front of him that he has to face for something that we tried so hard to prevent – it crushes me, it hurts my soul,” Melissa Diaz said.
Source: NBC Los Angeles
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