Sitting in her bathroom at home in Florida, Lily looked at all the little glass vials of hormones and medications her doctor had given her, along with the syringes of different sizes that went with each vial – everything she would need to get her body ready for her upcoming egg harvesting procedure. She began to feel her anxiety rising. Did she have everything she needed? Did it matter which one went first? She was afraid she was going to mess it up. It would be her first time injecting herself with anything, and she wasn’t sure if she could do it. But putting these medications into her body would be the start of something deeply important to her – something bigger than her fear.
“This Is What I Was Meant to Do”
Lily, a 35-year-old woman with a T-5,6 SCI, didn’t always want children, especially when she was younger.
“I couldn’t stand them,” she said, smiling. It wasn’t until she had a medical emergency at age 22 that her mind began to change. During the emergency she started experiencing internal bleeding that her doctors couldn’t pinpoint, and she was told there was a possibility some of her reproductive organs would have to be removed.
“I just started bawling my eyes out, because, you know.”
“After that summer,” she continued, “my cousin gave birth to a beautiful girl, and lo and behold, I fell in love with kids! Ever since then, I knew that this is what I was meant to do, and I just wanted them. If it were up to me, I would have had five by now.”
At age 35, Lily decided to have her eggs harvested and frozen for later use with in vitro fertilization. (When speaking of the egg freezing process only, the technical term is oocyte cryopreservation.) She knew it could sometimes be difficult for even relatively healthy, able- bodied women around her age to become pregnant; additionally, watching her older sister, Maggie, go through several years of fertility issues also encouraged her to go through the procedure.
Lily started to talk to her doctor about harvesting her eggs. Her OB-GYN had worked with other women with SCIs before – something Lily found very reassuring – and had never had a patient who had any negative reactions from the procedure that were SCI-related. Lily had various preliminary bloodwork and tests done and was going to start the hormones soon after; however, her younger sister, Kelly, then entered the hospital for a long stay and Lily realized it just wasn’t the right time.
“It wouldn’t have been fair. It would have been selfish of me to do that when my family clearly needed me to help out,” she said.
Her Secret Weapon
After her sister got home from the hospital, Lily and her family went to Israel a few weeks later; the procedure was put off again until they came back. Once she arrived back home, Lily and her doctor picked up where they had left off. She was prescribed the hormones and medications that would cause her ovaries to begin producing eggs for harvesting.
She soon found herself sitting alone in that bathroom, trying to summon the courage to begin the injections. Even though she had recorded a video of the nurse showing her how to perform an injection on herself, when it came time to do it at home, she felt lost.
“If you think that video helped anything with me...you saw in the group chat, I literally was freaked out!” Lily said. “I didn’t know what I was doing and [the nurses] were like, ‘watch the videos and you’ll be fine.’ It just wasn’t working out for me, and I was like, am I not as smart as I think I am?”
Fortunately, Lily had a secret weapon: Maggie, who had gone through the entire IVF process before. Maggie came to her aid the very next day and did the injections for her, showing her exactly how to do it.
“I have a video of her doing it for me and you see the calmness in me,” Lily said. After a couple of days, Lily got the hang of things and started doing the injections herself.
Some days she would be injecting herself with five different medications per day – and depending on what her bloodwork or ultrasounds would show, her medications might be adjusted or supplemented.
“It all depends on the numbers,” she said. “You’re literally at the doctor every day or every two days, like clockwork.”
A Family Affair
She did 11 days of injections and then two days of what’s called the “trigger shot,” the injection that induces ovulation and makes the eggs available for harvesting. Unlike the others, this injection had to be done in the buttock, not the abdomen.
“I was like, how am I going to inject myself?” Lily said. “I had my younger sister helping me. I said to her, ‘come inject me in the ass, please!’”
“It was all a family affair,” she continued. “I feel like it’s important to be open and honest about it and not have to do it so nobody knows about it. It’s a natural thing, it’s awesome that women have these things. Back in the day, we didn’t have all of this, so we should be thankful for it and advocate for it. So, I made sure the entire family knew.”
Once the trigger shot was administered, it was time for the egg retrieval. Even though the anesthesiologist seemed to be a bit nervous to be working with someone like Lily who had an SCI, the procedure went well.
After it was done, Lily made sure to eat and drink things that contained both electrolytes and sodium “to help balance out the hormones.” She also made sure to drink lots of water (in place of her beloved Diet Cokes).
Her doctor was able to harvest 22 eggs. While that was a high number, her doctor had already made sure Lily understood that with eggs it wasn’t necessarily just about quantity, but also quality. Lily was told that from that amount, they would likely get around 13 “good” ones. They ended up with seven.
At first, going from 22 eggs down to seven was hard for Lily to hear. But she soon learned that seven was a high number, relative to many who go through the process.
“When I heard that I was like, that’s being really selfish, Lily. You should thank the gods that you got this much.”
When her first cycle of injections was over, she realized she had a lot of medication left. Even though the first cycle had produced a high number of eggs, she asked about doing one more and was told, “it can’t hurt.”
Lily had come a long way, from not wanting children at all to being willing to go through an intimidating medical regimen to secure the option of having children when she was ready for them. And with a strong family support network and knowledgeable medical staff behind her, she felt ready to take on another round.
***
In the next article, Lily discusses possibilities for her future, the stigma surrounding IVF, and her advice for other SCI women thinking about going the IVF route.
***
Financial support for IVF:
Resolve: The National Fertility Association – a collection of scholarships and grants
CNY Fertility – offers a small discount for active military and veterans
INCIID – the International Council on Infertility Information Dissemination, Inc offers an IVF scholarship in the form of donated medical care
Fertility Lifelines –EMD Soreno, a company that produces some of the medications commonly used in IVF treatments, offers a medication savings program
ReUnite Assist – similar to EMD Soreno, ReUnite Assist offers medication discounts
Join us for an empowering Chat with Reproductive Rights Advocate, Samiyah Williams & Special Guests on December 11th at 3:00 PM EST! Find all the details on our homepage or events page.
Can't make it? No worries! We'll be recording the session and uploading it to our YouTube channel—stay tuned!
Comments