From birth to adulthood, Sherri Jones’ life has been both unusual and rare.
The 54-year-old resident of Red Deer, Alta., was born despite her mom using an intrauterine device — a one-in-100 occurrence.
“The IUD apparently had gotten stuck on her bladder, and it penetrated her bladder, which is why she was able to conceive,” Jones told Global News in an interview.
The IUD, which hadn’t caused any major problems for her mom’s pregnancy, was later surgically removed several months after Jones’ birth, she said.
From the age of three or four, Jones says she has been struggling with a series of health problems, such as leg pain, a speech impediment, vision issues and slow bladder development.
As she got older, she started feeling pain in other joints of her body.
“I was constantly back and forth to the hospital, I was in an ambulance, you name it, doctors’ appointments. It was all the time.”
In 2010, a then-39-year-old Jones was in a car accident, and her body pains got worse. An MRI scan showed a large Tarlov Cyst, a very rare neurological condition, in her sacral spine. Seven years later, she developed three new Tarlov Cysts at the surgical site of the first one.
“The pain has just been excruciating,” Jones said. “I haven’t been able to walk or sit or stand for long periods of time ever since this all started.”
She has suffered from blurred vision, dizziness, “crazy” headaches and short-term memory loss.
Jones said she has also been diagnosed with enlarged ventricles and a couple of small congenital deformities in her brain, as well as a connective tissue disorder.
“I’ve just had so many unique things going on with me, and they’re all rare.”
These health problems that have followed her throughout her life have raised a lot of questions, Jones said, as doctors have been unable to pinpoint the root cause.
“The majority of them are all rare diseases, so how does that get to happen? Something had to have played a role for that to happen.”
From doing her own research, Jones suspects the IUD might have caused her rare conditions.
“You find out about the different things that an IUD can do. It’s not to say it’s definitely done it, but I think it’s raised a lot of questions,” she said.
Jones said her “biggest concern” is that her three grandsons are now dealing with the same health problems and symptoms as she did as a child.
While her middle grandson has already been diagnosed with both attention deficit hyperactivity disorder (ADHD) and autism, she said doctors suspect the same for the other two. Her eldest grandson, like Jones, also has leg pain, delayed speech and gets headaches.
“It’s a little scary to sit and watch that happening all over again and again. Doctors can’t … pinpoint a cause,” she said.
IUD and pregnancy risks
IUD is one of most effective forms of contraception, with less than one per cent chance of getting pregnant, said Amanda Black, a professor of obstetrics and gynecology at the University of Ottawa.
“It’s also a long-acting method of reversible contraception, meaning that although it can be in for many years, once it’s removed return to fertility is pretty much immediate,” she said in an interview with Global News.
Hormonal IUDS are considered more effective, with a 0.1 to 0.5 per cent rate of failure, compared with copper IUDs that have a higher pregnancy rate failure of 0.8 per cent, said Darine El-Chaar, a maternal-fetal medicine specialist at the Ottawa Hospital.
Some studies suggest that women who conceive while using an IUD have a greater risk of preterm delivery, vaginal bleeding, low birth weight babies, bacterial infections and miscarriage.
That is why it’s generally recommended to take the IUD out when someone gets pregnant and they wish to continue with the pregnancy, El-Chaar said.
Otherwise, if the pregnancy has advanced or the strings have pulled up and are difficult to remove, the IUD is left in but closely monitored with ultrasounds, she said.
There is limited evidence to suggest a risk of congenital malformations or birth defects related to IUDs, El-Chaar said. And looking at the physiology, she said it would be “very unusual” for an IUD to cause a neurological disease — like the ones Jones is living with — adding that it’s difficult to make that association.
Black said she is not aware of any evidence that shows that IUD can increase the risk of neurological development for the baby.
A U.S. study from the 1980s reported two cases of women who gave birth to infants with anencephaly, which is a fatal neural tube defect. The authors said that the possible effect of copper on fetal development should be discussed with women who conceive with a copper device in place and elect to continue the pregnancy.
If the IUD did perforate into the fetus and caused any abnormalities, then doctors would be able to see that early on, El-Chaar said. “If there was an incident where it caused a fetal defect, I think it would be clear at birth.”
Jones, who is still trying to locate her birth records, is hoping to get more clarity about her rare health problems.
Since IUD births are uncommon, experts say it’s difficult to find a link between them and rare diseases.
By sharing her story, Jones is hoping to raise awareness about the potential risks associated with IUD use during pregnancy, advocate for research, and also highlight the challenges in seeking rare disease care in Canada.