Grieving Calgary mother wants women to know about life-threatening pregnancy complication
Jill Young's pregnant daughter died suddenly of severe form of pre-eclampsia called HELLP syndrome
When Jill Young's phone rang just after midnight on a Saturday she knew something was horribly wrong.
She immediately thought of her daughter, Cara Kernohan, who was 29 years old and 35 weeks pregnant.
"It was my son-in-law calling and saying, 'We're at Foothills [hospital]. I don't know what's going on. I'm scared,'" Young recalled
"I rushed out of here. And still at this point I had no idea what I was walking in to."
What Young was about to discover left her gutted. Kernohan had developed severe abdominal pains, and as doctors tried to piece together what was going on she went into cardiac arrest.
"From the time she arrived at the hospital to the time she went into a coma was all of 14 minutes," Young said.
There was an emergency caesarean section and her granddaughter, Blakely Cara, was born weighing four pounds nine ounces and immediately taken to the neonatal intensive care unit.
But Kernohan's body had suffered too much damage. A stroke caused inoperable bleeding in her brain.
"It was very surreal walking into a room where your daughter's all hooked up to machines and in a coma," said Young.
Kernohan was taken off life support four days later.
Tests revealed Kernohan had developed a severe form of pre-eclampsia called HELLP syndrome — a condition her mother wasn't familiar with.
There were so many questions.
"What is this and why wouldn't we have known all this and where did things go wrong?" Young asked.
'People aren't aware of these near-misses'
Experts believe pre-eclampsia occurs when a woman's placenta doesn't develop properly early on in the pregnancy, hampering blood flow. That leads to high blood pressure, which can damage organs and cause symptoms ranging from nausea and pain in the upper abdomen to headaches and swelling.
Signs and symptoms include:
- Elevated blood pressure.
- Excess protein in urine.
- Severe headaches.
- Blurred or altered vision.
- Nausea or vomiting.
- Abdominal pain on the upper-right side.
- Sudden weight gain and swelling.
- Decreased urination.
"HELLP is the very severe end," said Dr. Doug Wilson, head of obstetrics and gynecology at the University of Calgary's Cumming School of Medicine. "It's dangerous. Obviously it needs to be diagnosed quickly," he said.
Because the only way to fix the condition is through delivery, pre-eclampsia can lead to premature birth and death of mothers and babies.
"If we look at maternal mortality, which is very sad, in Alberta we have about 50,000 births a year. So, we're expecting somewhere around five mothers to be lost a year." said Wilson.
Pre-eclampsia — including HELLP syndrome — is one of the leading causes.
"Obviously we save more women than we lose but I think that's what people aren't aware of is that these near-misses are happening more and more."
According to Wilson, maternal death rates are on the rise — something he attributes to women having more pre-existing health conditions and delaying pregnancy.
"I don't think women are as aware as they need to be of pre-eclampsia or HELLP syndrome," said Leah Baker, a spokesperson with Preeclampsia Foundation Canada who almost died of HELLP syndrome in 2010.
The volunteer-run foundation's mission is to raise awareness about the life-threatening complication, which affects up to five per cent of Canadian pregnancies.
"Why we're not having a bigger conversation and dialogue about this I don't know," said Baker.
'How could this happen'
In Kernohan's case there may never be any answers. She was young and healthy and appeared to become sick very quickly.
"[I'm] shocked, just how in this day and age this can continue to happen," said Young.
One year after Kernohan's death, Young is working to harness her grief. She now runs a website to share her daughter's story and she's raising money for local research aimed at curbing pre-eclampsia rates.
Screening for pre-eclampsia risk
In Calgary, Dr. Jo-Ann Johnson is planning to launch an early pre-eclampsia screening and treatment pilot next year at EFW Radiology's Seton location, where she is currently working on a feasibility study.
The program, which is being organized by researchers in several Canadian cities, uses a risk prediction model developed by scientists in the United Kingdom. Women will be screened early in their pregnancy — at the same time other tests are offered for conditions such as Down syndrome.
"So we'd do the exact same thing except we will, when she comes for an appointment, take more of a detailed history. We'll measure her blood pressure and we'll measure her blood flow to the uterus," said Johnson.
Women considered at risk will be offered a simple treatment of two baby Aspirin at bedtime, which studies have shown can reduce pre-eclampsia rates by up to 82 per cent.
"If you were to prevent 80 per cent of those cases using low-dose Aspirin, you would save approximately $14 million on the maternal side alone. I think that is very powerful," said Johnson.
But after 30 years as an obstetrician, Johnson said there is much more to it than that. It's stories like Kernohan's that keep her pushing ahead.
"I think of her and there's no question it's worth it. If there's anything we could have done to prevent that outcome, we need to be doing it." she said.
'We don't know enough'
Young, who recently celebrated her granddaughter first birthday, is now focused on keeping her daughter's memory alive.
"I just feel that it's too important. We didn't know enough about [HELLP syndrome] and I know there's hundreds of thousands of other people that don't know about it," said Young, who has raised nearly $30,000 for Johnson's research.
On Oct. 6, Young will host the first annual Cara HELLPS run and walk from 10 a.m. to 1 p.m. at South Glenmore Park.
It will be an emotional day, marking the first anniversary of her daughter's death.
"I can't just sit back and go okay, I've lost a daughter, knowing it could happen to somebody else's daughter," said Young.
"She was so … loving, nurturing, kind … and I know she's by my side cheering me on."