Fertility preservation: One family’s story
Meet Grace
Six years ago, a family took a chance on a then-experimental procedure to give their young daughter more control over her future. Today, they are glad Grace* has options.
Just as school was starting in 2019, 6-year-old Grace was diagnosed with Ewing sarcoma, a type of bone cancer. "Once we had genetic confirmation, things moved very fast,” said Lauren, Grace's mom.
In the middle of meetings about port placement, bone marrow samples and treatment plans, they were introduced to a service they hadn’t expected: Fertility preservation.
The Children’s Mercy Fertility Preservation Program consults with patients of all ages who may be at risk for infertility as adults. The high level of alkylating chemotherapy needed to fight Grace's cancer put her at high risk. Children's Mercy wanted her family to know there were ways to protect her reproductive tissue for potential use years down the road.
Fertility preservation options at Children’s Mercy
Fertility preservation is recognized as a standard of care for oncology patients, but it’s not always offered to pediatric patients. Children’s Mercy is one of the few hospitals in the region to offer ovarian tissue preservation and testicular tissue preservation.
“People can assume that the goal of our program is to get everyone to accept some sort of preservation intervention,” said Fallon Olf, BSN, RN, CPHON, Oncology Fertility Nurse Coordinator. “But the goal is more so to educate patients and families on their calculated risk and give them a say in their future.”
The Children’s Mercy Fertility Preservation Program offers:
- Egg freezing for patients who have gone through puberty.
- Ovarian tissue freezing for patients of any age, in partnership with the University of Kansas Reproductive Endocrinology and Infertility (KU REI) group.
- Ovarian transposition - relocating the ovaries inside the body to protect them from radiation treatments.
- Ovarian shielding - using external shields during radiation treatment to protect the ovaries.
- Sperm freezing for patients who have gone through puberty.
- Testicular tissue freezing (currently experimental) for patients of any age, in partnership with KU REI.
“I remember talking at pretty great lengths with Dr. Fulbright about the options they had available,” said Lauren, referring to Joy Fulbright, MD, director of the Survive and Thrive Clinic. “It’s not anything any parent would want to think about. We processed for a bit.”
It’s the conversation that counts
But that thought process is exactly what the Fertility Preservation team counts as a win.
“I’ve never measured the success of our program on how many patients actually freeze an ovary or complete another preservation procedure,” said Tennille Hilyard, MSN, CPN, FNP-BC, APRN III, Pediatric/Adolescent Gynecology. “I measure success on how many patients and families we are able to educate to make an informed decision.”
The Fertility Preservation team starts all conversations by acknowledging that the patient may not ever want to have children: It’s never “when you have a family” but “if you want to someday.” In addition to the fertility preservation services Children’s Mercy offers, they also talk about the many other ways people build families. They help parents and caregivers discuss fertility preservation with patients in age-appropriate ways and help family members understand each other’s perspectives if they differ.
“It’s more about autonomy and not allowing the disease process to take that away from them,” said Tennille. “It’s about making the patient (or in some cases, the parents) feel like they are in control.”
One family’s fertility preservation decision
In 2019, ovarian tissue freezing was still labeled as experimental, but Lauren was encouraged by early evidence of success. If there was a chance Grace would want to have children but struggle with infertility someday, her family wanted her to have a possible solution.
“I thought it could give Grace the best chance at a full life with all the options anyone should have,” said Lauren.
When patients decide to freeze ovarian tissue, a surgeon removes 1 ovary through a laparoscopic procedure very similar to an appendectomy. The ovarian tissue is processed, frozen and stored in a third-party, temperature-controlled facility — ready to help if the patient does experience fertility issues later in life.
“Currently, the tissue is then reimplanted on the remaining ovary,” explained Tennille. “If the graft works, we see hormone levels start to rise and then hope to see the ovary start ovulating again, so patients can conceive naturally. Due to over 200 live births, ovarian tissue preservation is no longer considered experimental. However, it’s important to remember this is still a new science, especially in these young patients. Some centers have rates of success that are close to IVF rates of success, but this varies greatly based on age, treatment and underlying conditions. I always tell families this isn’t a sure thing, but it’s something we can offer to help give them a chance.”
Patients and their families pay the tissue storage fees (around $395 a year right now), and the only person with access to the tissue is the patient. At 18, patients have full rights to the tissue, whether they choose to use, discard and/or designate it to beneficiaries in a will.
Cancer-free with all possible futures ahead
Grace’s parents explained what they were doing in general, age-appropriate terms: They were taking all the steps to protect her future that they could. She had her laparoscopic oophorectomy at the same time as her port placement.
A little later, she had a successful surgery to remove the tumor, then 14 rounds of intensive chemotherapy — right as the global pandemic began. They finished her last round of chemotherapy in April 2020. Her oncology care team included Maxine Hetherington, MD, and Ashley Flynn, MSN, APRN, NP-C, CPHON.
“I completely trusted everyone at Children’s Mercy to do the right thing for Grace,” said Lauren, who said they relied on family, friends, their physicians and faith to get them through their ordeal.
Grace is now cancer-free and continues to see Dr. Fulbright in the Survive and Thrive Clinic, where she is monitored for any long-term effects of chemotherapy. As she’s gotten older, she’s grown into a deeper understanding of what fertility preservation means for her future options.
Lauren said the conversations about fertility preservation were a bright spot during that dark time. Emotionally, it was helpful to be proactive about Grace’s future at the same time it was being threatened by cancer.
“It made me really grateful for amazing researchers who care enough to do the research to give everyone every chance at a vibrant, full life post-diagnosis,” said Lauren.
More options, more possibilities
The Fertility Preservation team is excited about new research that is expanding possibilities for their patients, including testicular tissue freezing, which is experimental but promising. The team is currently consulting with up to 100 patients a year and doing 35+ procedures annually.
One of the team's biggest current concerns is making fertility preservation for pediatric patients more equitable. Processing tissue for preservation is rarely covered by insurance. Processing costs $1,000, and this is in addition to storage costs. The surgical procedures are not always covered by insurance companies, and many families are already paying their out-of-pocket maximums after a new diagnosis.
“Everyone deserves the conversation, and everyone should have the right to fertility preservation, if they want,” agreed Tennille. The team continues to look for designated philanthropic support to assist patients who choose fertility preservation.
Lauren’s advice for other families considering fertility preservation procedures is to look at the available evidence. “Your doctors are trained in these disciplines and can tell you the statistics and data,” said Lauren. “What are the risks? What are the possible outcomes? What are the success rates?”
Grace's family is grateful that they were given the opportunity to consider the possibilities. “Not that long ago, fertility preservation wouldn't have been an option,” said Lauren. “What a miracle and a blessing to have that opportunity — to have that gift available if it’s needed.”