Jason and Melissa Diaz thought they were giving their future child a shot at a healthy life when they opted for in vitro fertilization over natural conception. But according to a new lawsuit, what they got was nothing short of a disaster.
The California couple both carry genetic mutations: Melissa for BRCA-1, which predisposes carriers to breast cancer, and Jason for CDH1, which carries an elevated risk of stomach cancer.
Jason found out about his mutation in the summer of 2018, when he developed diffuse gastric cancer and was forced to undergo a gastrectomya full stomach removalwhen chemotherapy did not work. The life-altering procedure prevents patients from digesting food normally and causes chronic gastrointestinal pain, among other debilitating side effects.
When the Diazes decided to have children, they elected to go with IVF, so they could test the embryos for the genetic mutations before implanting them. According to the lawsuit, they wanted to achieve their dreams of parenthood without subjecting their children to the stomach cancer Jason and his family members had endured.
The fertility clinic they chose, HRC Fertility, advertises itself as having state-of-the-art embryology labs and remarkable lab personnel of highly trained and dedicated embryologists, according to the suit. It allegedly advertised their doctor, Bradford Kolb, as being known for helping to develop and implementing cutting edge technologies in the genetic screening of embryos.
From the beginning, they expressly advised HRC Fertility, its employees, and Dr. Kolb that they sought IVF with preimplantation genetic testing to avoid having a child with Jasons CDH1 mutation for hereditary diffuse gastric cancer, the suit states.
Jason and Melissa ultimately created five embryos with the clinic, only one of which did not carry either mutation, according to the suit. They transferred that embryo in August 2020, but Melissa ultimately miscarried.
Devastated but eager to try again, the suit claims, the Diazes asked their IVF coordinator to arrange for the implantation of a male embryo that the coordinator said carried the breast cancer mutation but not the stomach cancer mutation. (The couple considered this a safe choice because men are significantly less likely to develop breast cancer than women.)
Dr. Kolb transferred the embryo on Jan. 8, 2021, and Melissa gave birth to a boy in September. Jasons family threw a party for the couple to celebrate eliminating the CDH1 mutation from the Diaz family line, believing they had broken the curse that had doomed other family members to cancer and early death, the lawsuit states.
But the family was wrong. According to the suit, Dr. Kolb did not transfer a male embryo without the stomach cancer gene, because no such embryo existed. The IVF coordinator misrepresented the testing results and arranged for the transfer of a male embryo with the CDH1 mutation. The baby boy now has a more than 80 percent chance of developing stomach cancer, according to the suit.
We went through the difficult and expensive process of IVF so we could spare our children what Jason has had to endure, Melissa said at a press conference. We still cannot believe that after all we did ... our baby has the same genetic mutation we thought we escaped.
She added: Hes just such a happy baby, and to know the hurt in front of himthat he has to face for something we tried to preventit crushes me.
A spokesperson for HRC said in a statement that the Diazes had sought genetic testing and counseling outside of its facility, with a third party.
They wished to have a male embryo transferred, which we carried out according to the familys explicit wishes and in accordance with the highest level of care, the spokesperson said, adding that the company stand[s] by the professionalism and expertise of our medical staff and pride ourselves on adhering to the highest standards for patient care, patient records, results, and testing at all our locations.
According to the suit, the couples child will inevitably need to undergo a gastrectomy to prevent him from developing stomach cancer. They hope to delay the surgery until after he is finished developing, since removing the stomach before then could result in lifelong physical and cognitive impairments.
Jason, who saw two aunts die as a result of the cancer, called the results his greatest fear.
I wouldnt want anyone on earth to experience this type of pain, and now I will be forced to watch my own sonmy own flesh and bloodgo through this, he said. Every day my heart is hurting for my baby boy knowing the pain and challenges he has ahead of him.
Even if the child is able to delay the surgery until adulthood, he will still suffer from the pain, discomfort, and possible chronic diarrhea that afflicts many gastrectomy patients. The side effects may be so severe they will prevent him from taking certain jobs, according to the suit.
But the couple is not suing over the alleged wrongful implantation. Instead, they are alleging a coverup on the part of the fertility clinic, which they claim misled them even after the birth of their child.
According to the suit, the couple lived happily from September 2021 until July 2022, when they decided to try for another child. As part of this preparation, Melissa asked their new IVF coordinator to send over the report on the embryos they had created with HRC, so they could decide whichif anyof them they wanted to transfer.
What she saw on the report terrified her.
The embryo report, a copy of which is included in the complaint, contained handwritten notes that noted that the embryo transferred in January 2020the couples baby boywas positive for the stomach cancer mutation.
Melissa wrote back immediately, asking the coordinator to clarify whether the embryo theyd transferred carried the CDH1 gene. The coordinator did not respond. A week later, Melissa wrote again, saying the couple had been so stressed thinking of what our son will go through because of this genetic mutation.
Can you please double check that this is the correct report for our embryos? she wrote. Is there any way this could be a mistake? Again, the coordinator did not respond.
Eventually, the Diazes received a call from someone at HRC Fertility who admitted there had been a mistake, according to the suit, and called the couple in for a sit-down. When Melissa asked for a copy of her medical record, the clinic sent over a copy of the embryo report without the handwritten notes, the suit says, effectively removing the evidence of which embryo had been transferred.
HRC Fertility is one of the largest fertility clinics in the world, according to the suit, with nine offices across Southern California. The Pasadena office that the Diazes visited is a sprawling, 26,000-square-foot compound complete with luxurious VIP rooms, according to its website. According to the suit, the company is owned by Jinxin Fertility, one of the largest fertility companies in China.
Jinxin Fertility did not immediately respond to a request for comment.
HRC was also sued last summer by a same-sex couple who alleged that the center transferred a female embryo into their surrogate when they had explicitly requested a male. That suit, which also names Dr. Kolb as a defendant, is still pending in Los Angeles Superior Court.
A spokesperson for the company said last year that every child has value and limitless potential regardless of gender,'' and that they hoped the couple found love and value in their healthy child while so many across the country are struggling with reproductive issues.''
The Diazes have retained the services of Adam Wolf, an attorney known for his handling of IVF cases. Wolfs firm obtained a full copy of their medical record, handwritten notes included. They have initiated arbitration proceedings against HRC Fertility for the alleged wrongful transfer and are suing in California Superior Court for the alleged cover up.
The couple is requesting damages for their unimaginable mental anguish and for future lost wages and medical bills.
Tragically, this is yet another disaster in HRCs history of misusing patients genetic material and committing other grave fertility misconduct, Wolf said in a statement. In light of this history, I worry it will not be the last.
Excerpt from:
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