‘My son would have grown up knowing I died from a disease I’d passed on to him.’: Woman with rare disease shares heartbreaking decision to abort

More Stories like:

“When I think of my son, my mind always goes to his ten perfect toes.

I have a tilted uterus because of the removal of my colon when I was 19. It didn’t inhibit my ability to get pregnant and wouldn’t affect my pregnancy. What it meant was on the day I went to get my son tested, the ultrasound technician had a hard time finding him.

I had to be over 12 weeks along to get amniotic testing done. I was on the table for over half an hour, watching my son roll over and kick in my belly while the technician chased him around with a needle through my cervix.

Life With Familial Adenomatous Polyposis

I was diagnosed with Familial Adenomatous Polyposis when I was 11 years old. My father and grandmother have it, and we suspect her mother did as well. Undiagnosed and untreated, it kills you with colon cancer. The internet says the average age is 39, but it depends on how aggressive your mutation is.

woman with family
Courtesy of Lee Ann Sabean

When I was in the hospital recovering from my first surgery, the girl in the bed next to me cried and vomited late into the night. They had cut her open and put chemotherapy drugs directly into her intestines in a last ditch attempt to save her, because they had caught it too late. We swapped numbers, but I never heard from her again. I don’t think she made it.

There is no cure.

The cancer will always come back.

All they can do is keep cutting bits of you out until there isn’t anything left they can cut out without killing you. Then you wait for the cancer to come back, one last fatal time.

When I was 19, I had my first surgery. They removed my colon and created what’s called a J-pouch, or ileoanal anastomosis. I had a temporary ileostomy for five months while it healed, at which point they performed another surgery to close the ileostomy. I adjusted to my new normal, and moved on to the next stage of my life.

woman in mirror with bag on stomach
Courtesy of Lee Ann Sabean

A Complicated Pregnancy

I’d started a new job when I found out I was pregnant. I had been trying, but I had started getting the gnawing feeling my cancer treatment had stolen my fertility. Unsure about explaining my health condition to my work, I pulled my supervisor aside and explained to her I had a high-risk pregnancy.

She was over and above understanding. She immediately ordered me not to lift anything at work, and walked me to HR to talk to them about it. I suffered from hyperemesis gravidarum, and eating properly was a struggle. Every day when I came in to work, she quizzed me on what I had eaten. She even started buying food, hiding it at my desk, and checking to see if I had eaten all of it. It was a little much. It felt comforting to know someone was taking my health seriously.

They asked if I wanted to know the baby’s gender, since they were already peeking at his genetic code, and I said sure! Three weeks later, they called me to tell me it was a boy! I decided to name him Vincent, after video game character Vincent Valentine.

Two days later, they called me again.

The test was positive.

Deciding To Abort

This was even worse than a fatal diagnosis. The choice to end a pregnancy that wouldn’t result in a child anyways seems easier. My baby was healthy and would be healthy for the first 15-20 years of his life.

But I had already been through two surgeries.

woman in hospital bed
Courtesy of Lee Ann Sabean

I had seen my grandmother die of this disease.

When I was a child, my father was the biggest fitness nut I know. I watched as the disease took the ability to eat and work out from him. He lost weight until he was a skeleton. His hair turned grey and fell out from stress. His eyes looked like billiard balls, ready to fall out of the skull his face had become. His chest and stomach were a mess of scar tissue from repeated surgeries.

I wanted my baby so badly. I wanted his ten little toes, as he bounced and squirmed in my belly. I wanted to see those blue eyes and the thick black hair he had to have. But then I thought of him watching me waste away as I watched my own father waste away, knowing I had chosen the same fate for him.

Losing my colon changed my life forever. I can never eat a green salad again, never imbibe a carbonated drink. Even on days when I eat the right food, sometimes my stomach just throws a fit and I end up curled in bed, throwing up blood as gas bubbles tie knots in my guts. Every meal must be carefully planned, and this is only the beginning.

They told me I didn’t have to chose right away, but I did. Then, since I was at work, I went to tell my supervisor I was losing the baby. We cried together.

woman lying in hospital bed
Courtesy of Lee Ann Sabean

A week later they put the tent in, to open my cervix so they could extract him. It was a quick but uncomfortable procedure. I came back two days later. There was a blur of paperwork and explanations. My doctor offered to insert an IUD while she was removing him so I wouldn’t have to worry about getting pregnant afterwards, and I agreed. The procedure itself was explained to me, but I was unconscious for it.

My parents argued with me about the abortion. I felt, although they have never agreed, they wanted me to carry Vincent to term to assuage their guilt over cursing me with the same disease. My father has argued with me if he believed as I did, I would not be here, and I point out to him I wouldn’t know the difference.

We are both believers in the right-to-die movement as well, because when the end comes, it is slow and painful. My mother believes in a lot of alternate medicine and has told me at various times I only needed the surgery because I didn’t ‘want’ to be well. I eventually ended contact with her.

What His Life Would Have Been

Five months later, around the time my son was due, I was diagnosed with cancer again. It was a unique type of tumor called a Desmoid, which arises from scar tissue. It was literally a tumor arising from my first surgery. I was on chemotherapy for two years to tame the aggressive tumor, at one point even ending up in end-of-life care because I was so close to death.

woman in hospital bed with partner
Courtesy of Lee Ann Sabean

Every step of the way I was reminded of what my son would be going through if I kept him. I wouldn’t have been able to breastfeed him because the chemo drugs would be in my milk. I wouldn’t have been able to keep up with him as he learned to walk and crawl.

We would have been constantly dropping him off at daycare so I could be rushed to the emergency room. If I had died that weekend I was in end-of-life care, my son would have grown up knowing I had died from a disease I had passed on to him.

He would be six years old now, wondering and waiting for cancer to claim him as well.

I’ve recovered from that tumor, but my life hangs even more by a thread. Any abdominal surgery I have could potentially become a new tumor. I know the cancer will come back, and I will need more surgery.

woman posing in front of green screen
Courtesy of Kenneth Sookhai

Thoughts On Roe v. Wade

I live in Canada, but the choice of the American Supreme Court resonated around the world. I know there are women in the United States with my condition who now struggle with their options. They can’t chose to have any pregnancy tested, intended or not, because of how late the testing must be done, they would not be able to abort a fetus who tested positive.

Some people argue you could better prepare a child who tested positive if you know at an early age, but you can test after they are born then. The choice is between rolling the dice or not.

I’ve often said if I were in the United States, I would be dead by now. I know health care there is very expensive. I also know my parents wouldn’t have paid for my surgery, and at 19 I doubt I would have workplace benefits or savings to cover it. So I would be dead from colon cancer.

If I lived in the United States, the decision to reverse Roe v. Wade would have sent me to my doctor to ask for a tubal ligation. I would rather forever give up my ability to carry a child than risk having one with my disease.

I couldn’t chose this life for my son, as I wouldn’t wish it on my worst enemy. I’m strong, but every day is a challenge.

People want to take that choice away from me, but I am strong. I claim my health, my choices, and my future.”

woman standing against building
Courtesy of Lee Ann Sabean

This story was submitted to Love What Matters by Lee-Ann Sabean of Barrie, Ontario, Canada. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘I wanted to escape my body, run away. I wanted to not be here…on earth.’: Abuse survivor bravely shares abortion story

‘If I went into labor, there was over a 90% chance I would die.’: Woman candidly shares journey to medical abortion

As A Single Mom Who Didn’t Choose Abortion, I Wouldn’t Force This Life On ANYONE

If I Didn’t Get An Abortion, My Husband Wouldn’t Have A Wife And My Kids Would Be Motherless

Do you know someone who could benefit from this story? SHARE this story on Facebook.

For our best love stories, subscribe to our free email newsletter: