ALLEGAN COUNTY, Mich — Amanda Goulet was “completely shocked” to learn she was pregnant earlier this year.
“It was a very big miracle and a blessing that we didn’t expect,” she told FOX 17 News. “Emotions were charged. My husband was super excited. I was very worried. And hopeful.”
Goulet also feared that her body would attack her baby.
Due to a number of autoimmune conditions, the young mum already suffered three losses before learning that her immune system was at fault.
She was going to have a healthy baby girl, thanks to the help of an infusion treatment used to calm her immune system called immunoglobulin intravenous or IVIG.
Now expecting a baby boy in November, Goulet knew that IVIG would again have to play a major role in maintaining the pregnancy.
“Having the lupus diagnosis thrown in there and having clotting and bleeding issues thrown in there, it just makes the issue so much more complicated,” she explained.
Goulet’s team of doctors, including a reproductive immunologist in Chicago, and Dr. Martin Dubravec, an allergist immunologist based in Cadillac, Michigan, agree that treatment is best in Goulet’s case.
“It is not officially approved by the FDA as a treatment for this patient during her pregnancy,” Dr. Dubravec said. “But, there is clear scientific evidence, numerous case reports and her own experience that this drug has been beneficial for her, allowing her to carry her pregnancy to term.”
He continued, “It’s a life or death situation for her. And we can’t experiment, well, let’s try this instead, do that instead. She already has a history of what has worked.”
Expensive IVIG treatments — about $2,862 every two weeks — aren’t covered by Goulet’s insurer, Michigan’s Blue Cross Blue Shield.
“The reason they’re saying no is because my platelet levels aren’t low enough to be within their parameters of what they want,” she said. “My doctors say for them to be low enough, baby and I would both be in danger. So it’s a double-edged sword. I can’t meet the criteria because I can’t meet the criteria… my body would go into preservation mode to save me, and that would sacrifice the baby.
Goulet has turned to online fundraising to pay for the treatments so far, but there are still at least seven more to go.
“Right now we’ve funded about $33,000, which is amazing,” she explained. “But in total we would need another $20,000, that’s what we would need to take me to 40 weeks.”
FOX 17 contacted Blue Cross Blue Shield of Michigan and received this statement:
Blue Cross members can appeal a decision they disagree with, which may include an independent review by a physician not associated with us. Although we cannot comment on this case due to privacy laws, generally our reviews take into account the indication of treatment for a condition.
Goulet said she had already filed two appeals – both were dismissed.
Now halfway through her pregnancy, Goulet hopes she will continue to have a healthy pregnancy, despite the challenges.
“I think that’s what really drives us to try to find, okay, we just have to pay for the next IVIG, we just have to pay for the next IVIG. And that kind of gets us through. Every week , see him and make sure he’s okay. And it’s just one step at a time… We knew all along, we just love, we just need to share the story because he’s important, and it matters. It matters. And our people in our community will support us. And they did.
A GoFundMe page has been set up to help the family with the cost of treatment.
You can also donate directly to Infusion Associates on behalf of Goulet using the information below:
Carol Stream, Illinois 60197
Memo: 18872 – Amanda Goulet