"Instead of growing a baby, I grew a disease"

It’s been just over nine months since Kayla Wilcox discovered she was pregnant.

“I always wanted to have a baby,” she says.

But sitting at her dining room table, there are no signs of a baby anywhere in the house. It’s quiet and clean. Wilcox is still as tiny as ever.

“Instead of growing a baby, I grew a disease. A series of tumours in my womb that happened as a result of placental cells growing abnormally.”

It started last January, when Wilcox, 26, went for her first pre-natal check up. Wilcox and her husband were excited about the pregnancy. Starting a family has always been a dream of theirs.

But the doctor did not have good news. Wilcox learned her pregnancy was not viable and had to be terminated. Not knowing much about the options she was given, Wilcox chose to take a pill to induce miscarriage.

“Despite everything I went through I still say that one of the worst days of this entire experience was the day I was told that my pregnancy wasn’t viable,” she says.

This was the first misdiagnosis for Wilcox. Her doctor thought she had a blighted ovum, a common cause of miscarriage when the fertilized egg attaches itself to the wall of the uterus.

However, almost a month after taking the pill, Wilcox says she was still miscarrying.

“I didn’t know what was happening to me. I really had no way to gauge because it was my first pregnancy, my first miscarriage.”

She eventually went to the emergency room and was told she may have miscarried twins. They performed an emergency D&C, a surgery that scrapes the wall of the uterus to remove any tissue that was not purged naturally. It wasn’t until that tissue was tested that Wilcox learned it wasn’t twins, but a molar pregnancy.

According to the American Pregnancy Association, a molar pregnancy happens in 1 out of 1000 pregnancies. It is when the egg is fertilized incorrectly and leads to abnormal tissue growth in the uterus. Molar pregnancies are also called gestational trophoblastic disease (GTD). Wilcox miscarried for so long because tissue was continuously growing inside her uterus. She says she suspects they would have diagnosed the disease a lot sooner had there been a follow-up after that first check up.

“Now knowing what I know now about molar pregnancies, I wish that I had pushed more for a follow up. But I wish my doctor would have said okay, well let’s just give you another ultrasound, let’s just see if you retained any product.”

After the emergency surgery, Wilcox was monitored weekly. Her doctor was checking her hCG levels to see if the pregnancy hormone was decreasing. But it was not. Wilcox says the levels rose, fell, then plateaud. With the plateau, her disease took a terrible turn. It indicated the cells were cancerous.

“It was a malignancy because it had the ability to grow and spread to other organs,” she says, “That’s why they started me so quickly on chemotherapy once that happened because the disease can actually spread to your liver, your lungs, your brain.”

By this point, it had been nearly five months since Wilcox first thought she was pregnant. She says she had to deal with daily reminders that her plans of starting a family had gone horribly wrong. She watched her friends get pregnant and have babies while she was now getting tested to see if the disease had spread to her lungs.

“I was absolutely terrified. But at that point just having had the disease for so long I was really getting anxious to just say ‘Okay, if I’m going to need treatment then give me treatment.’ I was tired, I was ready to move on with my life. “

Luckily, the disease was contained to her uterus. Wilcox started chemotherapy on June 30th. She was given a PICC line in her vein so she could receive treatment more easily, rather than frequent IV treatments. But Wilcox had complications with the PICC line. The radiologist had a hard time inserting it into her small vein and caused nerve damage. Wilcox says the pain kept her awake at night, only adding to the fatigue caused by treatment.

“Had I not had PICC line complications, my experience with chemotherapy would have been half as traumatic.”

Wilcox received a concentrated dose every two weeks. She says she suffered from a lot of fatigue, but the side effects were otherwise very manageable. She did not lose her hair, but says it did thin significantly. She says the most upsetting part was looking in the mirror after getting a new dose.

“I would be either pale or yellow and my eyes would be sunken in. To just look for life in myself was upsetting, and to just see myself so ill and to feel so unwell.”

Wilcox says she tried not to feel too much self-pity. She regularly saw people in worse condition at the oncology clinic. Her chances were good, GTD is almost 100 percent curable with chemotherapy.

“I knew it was what was necessary to beat the disease and get my life back,” she says, “and I also knew that I was doing a lot better than a lot of the other people on chemo and I was thankful for that.”

Wilcox spent the summer on chemotherapy. Her hCG levels went down, then disappeared. By August 25th, just days before her birthday, she had her last treatment.

The effects of chemotherapy can last for months after treatment stops. Wilcox says she is still weak and fatigued, but is slowly getting her strength back. She’s now back at work on a part-time basis.

It has been a life-changing experience for Wilcox. She says she always thought cancer could affect her one day, but never so soon.

“Cancer is rampant in my family, especially on my father’s side. So I guess I had this idea that down the line one of these days that it might happen, but not in my twenties, and not as a result of just trying to have a baby.”

Wilcox still dreams of having a baby one day. She hopes to try again once she feels ready. She says she still has a long way to go both mentally and physically before she gets there. There is also a chance the same thing could happen again.

“My chances of having a molar pregnancy are now about seven times higher than they were before. But they’re still only one to two percent,” she says, “I feel like the stats are on my side.”

Wilcox says the experience has also given her a new perspective on life. She says she doesn’t focus on small things as much and now looks at people a little differently.

“I think many people would look at me and they would never even imagine what I went through this year, they wouldn’t know. So I look at people differently now. I wonder what they’re carrying on their shoulders and it makes me more patient with people who aren’t maybe that friendly or patient.”

The experience also taught Wilcox how to look after her own health. She researched her condition extensively and learned how to become her own advocate. She says there was a lack of information in the medical community about her disease and often felt like she was educating the people who should have been educating her.

“You’re very scared going through something like this, but you’re all the more scared when you’re dealing with the medical community and they don’t understand it.”

She thinks it’s important for pregnant women to know about GTD and molar pregnancies. While the conditions are rare, she says it’s something that women who miscarry should be aware of. Most importantly, Wilcox says women need to listen to their bodies and visit the doctor if something doesn’t feel right.

“If you do have symptoms or problems that you didn’t anticipate, find out what they are and make sure that your doctor gives you the follow up that you need.”

For more information on gestational trophoblastic disease, visit the American Cancer Society website at cancer.org.