The family of Isabella Rangiamohia Alexander are still picking up the pieces of their shattered lives a year on from her sudden death aged 17, and are calling for changes to the healthcare system to avoid it happening to others.
Isabella collapsed while on a walk with her father, Michael, near her home in Muriwai on September 9 last year, a few weeks into Auckland’s lengthy lockdown.
The St Mary’s College Year 13 student was rushed to Auckland Hospital but died early the following morning, with her immediate family present when the machines were turned off.
On the morning of her death, blood clots were found in her lungs and legs, which the coroner’s report now reveals were linked to the risk factor of taking oral contraceptive pills while carrying an inherited blood-clotting disorder called Factor V Leiden.
Isabella’s mother, Teresa Hura-O’Connor, said they were not aware of her daughter’s condition. The disorder meant the estrogen in oral contraceptives made her more likely to develop blood clots.
The coroner’s report listed the direct cause of death as pulmonary thromboembolism (blood clotting in the lungs) and the indirect cause as heterozygous Factor V Leiden mutation exacerbated by recent commencement of oral contraceptive pill usage.
Because she was taking the pill and had recently received the Pfizer vaccine, her death was referred to the national duty coroner and an inquiry was opened. Coroner Janet Anderson wrote “there is no evidence available to me to suggest that the Pfizer vaccine had any role in her death”.
“Isabella’s death is a reminder that widely used, and relatively safe, medications still have risks,” said Anderson.
Hura-O’Connor said the lives of her family were shattered by the sudden death.
“Our hearts were broken on that day,” she said. “A year on, we still cry for her, are devastated by the loss of her in our life.”
Isabella was a high-achieving student with the world ahead of her. She had been accepted as an early entry at the University of Auckland’s law school for this year and made their arts mentoring programme. She was also a keen swimmer competing at NZ Open events and netballer in the under-18A College Rifles team.
Her Ngati Tuwharetoa/Ngati Awa heritage was important to her, evident in her time in kapa haka and her Māori and justice-themed paintings.
“Her dreams for the future are over now,” Hura-O’Connnor said. “Like all parents who have lost a child know, this trauma will never leave us, it is an agony we wake to every day that she is no longer here.”
Now the family are asking whether anything more could have been done to save Isabella and reform the healthcare system.
Jagged little pill
The pill is used by more than 100 million women worldwide. It’s been available for more than 60 years in New Zealand and created immense social changes when it was introduced.
Here in New Zealand, oral contraceptive use is higher than in many other countries and trending up.
It’s become a normal part of life – a survey by Family Planning New Zealand in 2020 showed 88 percent of respondents had used the pill at some point in their lives.
Hura-O’Connor said it bears repeating this medication can cause a deadly reaction in rare cases, and wants to see more monitoring for adverse symptoms.
She said many of Isabella’s friends were shocked at newspaper reports saying she had died from an adverse reaction to medication.
They didn’t consider the pill to be medication.
“They told me the range of reasons they take it – to avoid pregnancy, stop menstruation pain, clear up their skin or as a lifestyle drug to not menstruate because it is a nuisance,” she said. “Oral contraception has become so normalised in our daily life that the risks can almost feel non-existent.”
However, there are real risks associated with the pill, which uses hormones to prevent regular menstruation from occurring.
Health Navigator New Zealand lists a range of people who should avoid oral contraceptive pills using estrogen.
These include smokers over 35, people who are overweight, diabetic or about to have major surgery. Then there’s people with gallstones or high blood pressure, heart attack and breast cancer survivors.
Nestled in that list is anybody with close family members who have experienced a blood clot in their legs or lungs.
New Zealand’s Fertility Associates medical director Dr Andrew Murray said any doctor prescribing the pill should take a thorough history to look for possible contraindications and also think about the worst scenario the prescription could lead to.
“Doctors assessing someone with such symptoms need to think ‘What is the most serious thing this could be?’ and investigate accordingly.”
Hura-O’Connor said a poster on the wall of every GP practice warning of the possible symptoms of a blood clot could be a start.
“Give the public the information they need to stay safe – it might just get the bell tinkling in a teenager’s head and keep them safe,” she said. “Let alone the rest of us.”
But what of the genetic disorder Isabella was unknowingly carrying?
Factor V Leiden is carried by at least 5 percent of the European population, which would amount to about 180,000 people in New Zealand.
A lack of testing means most New Zealanders with the condition don’t even know they have it, although they are supposed to be wary of obesity, smoking, leg injuries, long flights, oral contraception and HRT medication.
For a young woman like Isabella with Factor V Leiden, there is a higher risk of clots forming during the first year of taking an oral contraceptive pill: the same is true for one in 500 women.
A blood test to determine whether a person has the disorder costs about $100.
Auckland District Health Board said although a positive result to the test is common, there are only a limited number of scenarios in which it will change the way a person is treated.
Most of these are in situations where a young person has unprovoked clotting, or when women with a history of venous thrombosis are pregnant or planning to be.
Without widespread testing, young women are asked about their family history when it comes to blood clots before being prescribed the pill.
Family Planning NZ’s communication manager Sue Reid said current laboratory recommendations were that there was a limited role for routine testing for Factor V Leiden and access to these tests was restricted.
“Family history plays the most important role in assessing the risk of inherited medical disorders.”
Hura-O’Connor wants to see teenage girls funded for the Factor V Leiden test when they are first prescribed the pill, especially given an adult/guardian is not often present as was the case with her daughter.
“Asking a teenager for their family medical history is not good enough,” she said. “While researching this, I had to look up – what is a clot? So how is a teenage girl, with a good-looking boyfriend, going to know or even care about answering this question?”
She argues most will answer just as Isabella did – with a no that covers off any blame in the event of a later accident.
“Imagine asking a 13-year-old girl this question, without a guardian present, and accepting the answer without referring to her medical history – this happens right now in New Zealand.”
Keeping medical records
Hura-O’Connor is also calling for easy online accessibility around medical histories for doctors in different settings with consent. She pointed to comparable countries such as the similarly populated Finland, where medical records are stored in a centralised registry.
Isabella at first was on oral contraceptives she had managed to get off a friend, hoping to keep this private from her own school.
It’s a move she told her mum was common enough among her peer group.
What it meant was that when she started feeling ill in the months before her death, even ending up in hospital briefly, medical documents indicated health professionals were proceeding as if she were on no medication because Isabella did not tell them otherwise.
When Hura-O’Connor realised Isabella was on the pill she took her to a doctor near her school to get her own prescription. The family lives in an apartment in the city during the week so Isabella went as a casual patient to GPs there who didn’t have access to her medical history.
As Isabella was over 16, her mother was not allowed in for the appointment. Hura-O’Connor reminded her to tell the doctor about her stay in hospital and health troubles, but doesn’t know if she did.
Isabella had been nauseous and dizzy at the beginning of the school year, after having been on the pill for a few months.
On a family trip to Queenstown in April, she had a cold along with the rest of the family, and she complained of a cough, nausea and a sore leg, which she put down to sport.
When the cough persisted, Hura-O’Connor took her to another city GP who detected a faint heart murmur, leading to Isabella spending two nights in Auckland Hospital for tests.
At that time, no records showed she was on the pill as Isabella didn’t pass this information on – despite her mother urging her to.
Three days before her collapse in early September, Hura-O’Connor read up on the symptoms of an adverse reaction to the pill and took Isabella to her regular doctor’s practice, as she felt breathless and nauseous and still complained of sore legs. Now on her own contraceptive prescription, the doctor was aware of it, but didn’t think Hura-O’Connor’s worries about continuous use of the pill without menstruating were relevant.
A few days later, Isabella was gone.
Hura-O’Connor said changes to the system may prevent this trauma happening to another family.
“I do not blame any doctor for what happened to Isabella. I would hate to have that responsibility for another person’s life resting on my decisions and they were all intelligent, caring members of our community.”
But she argues a more meticulous centralised record system available to all doctors would keep patients safer by allowing easier access to their health history and prevent young people from circumventing the rules too.
“Introducing such a convenient, centralised file could save lives across the board, not just for women” she said. “In Isabella’s case, accessing a full medical file with an NHI number might also deter teenage girls wriggling around the system by sending friends to get their prescriptions if they knew the nurse would add it to their own general medical file.”
Murray said a centralised health record would be a desirable game changer.
“Unfortunately I suspect this is a long way off,” he said, but urged Te Whatu Ora Health New Zealand to start work on it.
“It would be pivotal in achieving a more integrated healthcare system.”
Coroner Janet Anderson said her investigation into the death revealed the untimely end of an exceptional and vibrant young woman who lived life to the full.
She made her own set of recommendations in the report, calling on prescribers of the pill and other hormone-related medications to make sure they’ve taken a full clinical history and informed patients about the risks of venous thromboembolism, the seriousness of the condition, and the symptoms to look for.
These symptoms include leg pain or swelling, skin that feels warm to the touch and reddish discolouration and streaks.
She also pointed to advice she sought on the case from Dr Claire McLintock which referenced recent studies showing emerging data of an association between vaping and the development of blood clots, possibly because of activation of clotting cells called platelets or direct damage to lung blood vessels.
“Although Dr McLintock notes that data from large cohorts is not yet available, I strongly encourage medical practitioners, and people at increased risk of venous thromboembolism, to be alert to these possible risks,” she said.
Isabella had been vaping since the previous summer and had once admitted to a cousin that she felt addicted.
Smoking is an added risk for those with Factor V Leiden on the oral contraception pill, but Hura-O’Connor said teenagers didn’t see vaping as the same as smoking.
“They see it as a harmless bit of fun, even though many of them are now using quite strong nicotine products,” she said.
She said none of Isabella’s friends smoked cigarettes previously, but nearly all of them now vape.
“Something has seriously gone wrong here by allowing our young people to have such easy access to these products. It’s not right, they are experimenting with our children’s health.”
Hura-O’Connor also wants to see changes to vape availability, saying they should just be available on prescription to those who are trying to withdraw from smoking nicotine cigarettes.
“I don’t want to hear that it’s too late, that the bull is out of the gate,” she said. “The government created this mess, fix it now.”