‘True knot’ warning
Couple raise awareness of rare condition after daughter’s tragic death in womb.
Hawke’s Bay baby Harper Jean Elliot should have recently notched up her first month of life.
Her parents say she would have grown up to become a wellknown athlete. Instead, she died before she was born due to a rare phenomenon that occurs anywhere between 0.3 to 2.1 per cent of all deliveries.
‘‘It is the worst pain I’ve ever felt in my entire life,’’ dad Steve Elliot said.
Harper had a knot in her unusually long 81cm umbilical cord. Described as a true knot, it restricts blood flow to the foetus, causing death.
True knot diagnosis is hard to come by; regular ultrasound produce pictures that help examine a baby using sound waves. But it can’t determine if a baby is getting enough blood.
Parents must opt to undertake a colour doppler foetal monitoring scan, which measures the blood flow through the umbilical cord and around different parts of an unborn child’s body.
The problem for Hastings parents Kirsten Parcell and Elliot, they said, is they weren’t told about the doppler scan.
‘‘Had we known, then we would have asked to have it performed.
‘‘We are confident that our baby would have been born alive,’’ Elliot said.
They don’t want their first child’s death to be in vain, and are throwing their energy into raising awareness about the different scans available.
There were 17 deaths from a true knot in the cord over nine years from 2007 to 2017, according to a report presented to the Health Quality and Safety Commission New Zealand in 2017.
The Perinatal and Maternal Mortality Review Committee’s 11th annual report identified the event occurred in about 1 in 32,000 births.
A New Zealand College of Midwives spokesperson said midwives would normally identify a true knot following the birth.
‘‘The unexpected death of a baby is deeply distressing for the woman, her family and the health professionals involved.
‘‘A true knot in the cord is an unpreventable and rare event, which is difficult to identify dur- ing pregnancy.
‘‘Not all true knots in the cord result in the loss of the baby, with many babies born healthy and without any signs of distress.’’
Twenty-two days after cremating Harper, the Hastings couple shared their harrowing experience in a video on Facebook.
Parcell describes the pregnancy as ‘‘fairly underwhelming’’ - regular scans identified nothing to worry about, the baby was active.
But that changed on December 29. Parcell told her midwife dur- ing a regular appointment that there was ‘‘reduced movement’’. Alarmed, the midwife insisted they go to hospital immediately.
A monitor showed a varying fluctuation in the baby’s heart rate, Elliot said. Medical staff told the parents that the rising heart rate was due to increased activity, and that the baby was fine.
The baby wasn’t moving the following day, and after three scans, doctors announced the lifechanging news. Elliot now knows his baby ‘‘was dying in front of us’’ the day before.
‘‘She was struggling for oxygen right in front of our eyes.’’
Twenty-six hours later, on New Year’s Eve, Parcell gave birth. ‘‘We were devastated. I felt shattered; mentally, emotionally, physically,’’ she said.
‘‘If we can help even just one baby from suffering the same fate as ours, then Harper would not have died in vain.’’
Their Facebook video has since been viewed more than 160,000 times, and they even Facebook messaged Prime Minister Jacinda Ardern, advocating that true knot be screened more thoroughly.
The ‘true knot’ can be seen in the umbilical cord.