Jess’s story
In May 2021, Grant’s life changed forever. Sadly, during an emergency C-section his sister, Jess, who had a rare condition called Klippel Trenaunay Syndrome (KTS), passed away. He wants Jess’s story to help others, in the hope no one experiences what his family went through.
Who is Jess?
Jess was born 9 August 1994 and from that point on, she brought so much laughter, joy and positivity into my family’s life.
I was her little shadow. We experienced so much of life together as we grew up as brother and sister. Sharing all of the joy and grief and mischief of our childhood, we were not only siblings but the very best of friends.
Her support, love and guidance shaped every part of my being. Without her, I wouldn’t be half the man I am today.
KTS
Jess was born with Klippel Trenaunay Syndrome (KTS).
KTS is a rare congenital vascular disorder in which a limb may be affected by port wine stains, varicose veins, too much bone, and soft-tissue growth.
KTS affected Jess in many ways which included painful thrombosis, inflammation, muscle cramps, and joint and bone pain. Jess struggled with all these symptoms.
There is very little research on the effects KTS has during pregnancy…
Jessica’s Pregnancy
Jess had such a protective and motherly instinct to her. When Jess met the love of her life Jack, I knew she was excited to start building a family.
I still remember the phone call; we were both so excited and over the moon. ‘You’ll make the most incredible mother, Jess’ I remember saying to her with pride. We found out shortly after that she was going to have a baby girl; ‘we’re team pink’ was the message I received. She decided to call her phoebe. I couldn’t have been happier.
At 24 weeks into Jess’s pregnancy, her consultant made the decision to give Jess a blood thinning medicine that reduces the chance of blood clots, as it was likely Jessica was going to have an imminent c-section. She was transferred to hospital to deliver Phoebe early due to Jess having severe hypertension as a result of her KTS.
Scared, the doctors explained to Jess that due to Phoebe being delivered so early the survival rate was really low and that she could be born with a number of different disabilities due to early delivery, Jess asked me if she could refuse the c-section as her priority was Phoebe being healthy. ‘I don’t care about me Grant, I care about Phoebe and I just want her to be healthy and safe’.
Luckily the team at the hospital were able to control Jessica’s hypertension and she was discharged! At that moment, it felt like everything was going to be fine.
That feeling was short-lived. A few weeks later, Jess had cramps in her side and was taken to another hospital, her severe hypertension had returned and the doctors made the decision to perform an emergency c-section.
On the 14 May 2021, shortly after Phoebe was born, Jess went into cardiac arrest and later died, she hadn’t had the chance to hold Phoebe and only saw her for a split second.
Why, what and how?
You’re probably asking the same questions I asked myself after Jess passed away, this should be a happy day celebrating life, not death.
In January 2023 I attended the Coroners Inquest Court where we learned that the cause of death was ‘pulmonary embolism’ that arose from a deep vein thrombosis (the risk of this was increased by the KTS).
The Coroner said ‘there had been a failure to ensure Jess was given the blood-thinning medication that she needed due to her high risk pregnancy. If she would have been given this as intended that on the balance of probability this would have likely changed the outcome’. Two weeks prior to the c-section, the medication Jess had been given had been stopped by accident.
The Coroner went on to highlight ‘there was a clear lack of communication and no documented evidence of clinicians considering the impact that KTS may have had on Jess’s pregnancy’. Due to the severity of the concerns and failings highlighted a rare prevention of future deaths report was issued.
Justice for Jess
I struggle everyday navigating life without having my best friend with me. I still feel rage that her condition was overlooked and that she wasn’t given the medication she needed. Had the right procedures been in place and her KTS been taken seriously, Jess would still be with us, Phoebe would have her mother and I would have my sister and my best friend. That joy has been stolen from us.
Even with all of my grief, I know Jess would have wanted her story to matter. It’s my heartfelt desire for Jess’s story to be a legacy that can help others rather than a tragedy that is forgotten with time.
I’d plead with anyone who has KTS or any condition that increases the risks of blood-clots to ensure that they speak to their medical team about anticoagulant medication when pregnant, as this could save a life. A short but life-changing conversation could spare someone the pain that my family continues to suffer with in a life without Jess.
Thank you for taking the time to read Jessica’s story.