At 24, Vanessa Langlois is wise far beyond her years.
She and her high-school sweetheart husband, Chandler, have dreamed of starting a family since they got married in 2016. In the moment their daughter Sarah was born in February 2018, their dreams had come true. Those dreams turned to unimaginable nightmares a few days later when they learned that their beautiful baby girl had Zellweger syndrome — a condition they had never heard of before.
Doctors went on to determine that both Vanessa and Chandler, who grew up and live in Plaquemine, were genetic carriers of the rare syndrome. Any child they conceived naturally had a one in four chance of having the disease. Carrier frequency is extremely rare — and the chance of both parents being carriers is less than one in a million.
In the six short weeks Vanessa and Chandler had with Sarah, their love and grief grew simultaneously. During that time, Vanessa made her infant daughter promises about the future.
In addition to mourning their first-born child’s death, the couple also had to come to terms with the fact that any future offspring might also be affected. Their best chance to conceive a healthy baby was through the science in vitro fertilization offers.
A year after their daughter’s death, Vanessa and Chandler met with Dr. John Storment, founder and medical director of Fertility Answers.
“We took a leap of faith and went to our consult,” said Vanessa. “The first visit was overwhelming. I knew the process was lengthy and invasive and what I would have to go through, but if that would get me my baby, I also knew that I could do it.”
After the meeting with Storment, Vanessa and Chandler began to look at the reality of the finances of in vitro fertilization. Once they got a more realistic picture of the costs involved and evaluated the possibilities, they realized that the total would exceed their expectations and pocketbooks.
“I felt like the rug had been pulled out from beneath me again. We couldn’t afford it. I felt sick,” she said. “Then, Dr. Storment told us about the Gift of Hope and suggested that we apply. We went ahead and applied, but, still, I had no expectations of winning.”
Launched in 2006, the Gift of Hope program began after Storment and his colleagues at Fertility Answers were inspired to create a local community effort to help a deserving couple pay for IVF services.
One in eight American couples struggle with infertility each year and only a quarter of healthcare insurers offer coverage for infertility care. For many couples, like the Langlois, coming up with the funds to pay for treatment not covered under their medical insurance is almost impossible.
Since its inception, 18 Louisiana couples have been chosen for the Gift of Hope IVF grant. Nine babies have been born as a result of the grant program. Storment estimates that the combined value of donated services for a single Gift of Hope IVF grant is about $15,000.
For Vanessa and Chandler, Gift of Hope restored their hope about building the lives they dreamed of having.
“We had been hoping for a shot at having our baby for so long, and our prayers had been answered when we got that call,” Vanessa said. “I had an indescribable feeling and a sense of relief.”
Storment says that diseases of the reproductive system are no less diseases than cardiovascular or neurologic diseases, but the insurance industry largely precludes treatment of these diseases.
“It is extremely rewarding to be able to offset the costs through the Gift of Hope,” Storment said. “Ideally, we hope that each year can lead to a greater awareness and need for these services to be covered by insurance and to increase awareness of infertility and reproductive health disorders.”
Between 60 and 100 couples apply for the Gift of Hope each year. Storment admits the difficulty of choosing one couple over the others. This decision comes from a committee of local community volunteer leaders, who reviews the personal stories of infertility and considers factors such as financial needs and the medical necessity for IVF.
Vanessa is currently undergoing an eight-week process called probing, which will help determine which embryos will be affected by the Zellweger gene. By identifying which embryos are healthy, Preimplantation Genetic Testing can prevent the devastating outcome of both parents passing the gene to the fetus. After probing, the couple can begin the IVF process. The Gift of Hope grant does not include preimplantation genetic diagnosis, the procedure used prior to implantation to help identify genetic defects within embryos and prevent certain genetic diseases or disorders from being passed on to the child. The Langlois will pay for that part of the process.
“The name Gift of Hope is so true – I do have hope now,” said Vanessa. “I can see the pieces of the puzzle coming together.”
The couple is sharing the joy this news has brought them with many others. They have always leaned on each other, as well as their families through their hardships. Vanessa has also dealt with the emotional aspects of the process with her daughter Sarah in mind.
“I want to make her proud,” Vanessa said. “I had the choice to either die with her or keep going. I promised her I would keep going.”