Harminder and Jessica's story
Written by Mum Nikki

Harmy, who is now 17 years old, was just three when she had her first seizure, during which her lips turned blue, and her heart stopped. After months of continuous seizures, despite all tests for epilepsy returning negative, GPs and consultants who saw her continued to say that this was what it was. After a further year of tests, I refused to put Harmy on Epilepsy medication as I knew in my heart the consultant was wrong.
Instead, I decided to take my little girl to see a private cardiologist, who, without even checking her blood pressure, knew exactly what was wrong with her just from my description of the seizures. He called it “Sleeping Beauty Syndrome”, which we today know as Reflex Anoxic Seizures. As we understand, this condition causes the heart to stop for a few minutes before re-starting itself due to the vasovagal nerve from the heart to the brain being overly sensitive.

It took a further 11 years of testing and monitoring to finally catch a reading of Harmy’s heart activity during these seizures. Two days before her 14th birthday, the ILR (Internal Loop Recorder) device was implanted just above her heart by the electro cardiologist Dr Till at the Royal Brompton’s Children’s Cardiac Unit. This recorded her heart stopping for 24 seconds, which for a RAS patient was very serious. She was then rushed into the Children’s Cardiac Unit to have a pacemaker fitted.

We had hoped this would end the fainting attacks, but sadly this has not been the case, as she suffers from low blood pressure. This has resulted in more collapses requiring ongoing medical care and admissions to The Brompton.

However, despite all these problems with her heart condition, which is now known as VVS (Vasovagal Syncope), Harmy still manages to lead an active life, never letting her health hold her back. She was promoted to a CCF (Combined Cadet Force) Corporal and awarded a Leadership Shield for mentoring younger cadets, and was selected to carry an Olympic Torch in 2012. She passed 13 GCSE exams with A* – C grades and got into the 2nd best girls’ grammar school 6th form in the country. She has high expectations for herself and is looking to work for the United Nations later this year, with her first trip being to Geneva.

In 2011 Harmy’s sister Jessica, who is now 10 years old, was also diagnosed with a serious heart condition. It is called SVT (Supraventricular Tachycardia), for which Jessica is on a twice-daily course of heart medication. It has made Harmy even more determined to live her life to the full and achieve all her goals. She wants to show her sister and all cardiac children that life is so much more precious when living with a heart condition.

None of this would be possible for Harmy without the expert care and medical support from the Royal Brompton Hospital Children’s Cardiac Unit’s specialist cardiologists and nurses. They saved both sisters’ lives, for which we will be forever thankful. For a cardiac patient, every second counts, just like every penny counts towards providing that expert care and support at the Royal Brompton Children’s Unit.

More families we have helped

Edward's Story
Edward David Nash was born with AVSD (Atrioventricular septal defect). This condition had been picked up prenatally, so we knew what was to come. Edward often had cold hands and feet and a very pale complexion due to poorly oxygenated blood. He would also struggle to feed, becoming breathless and tired. At four and a half months old, Edward was admitted to the Royal Brompton Hospital Children’s Cardiac Unit for his planned heart surgery.
Daisy’s Story
Daisy was born in September, weighing a very healthy 8lbs 4. Everything was fine for the first three months, then on New Year’s Eve, she was diagnosed with hip dysplasia and fitted with a hip harness for four months. This seemed to solve the problem, but soon after, we noticed she had very poor muscle tone and wasn’t doing the things a typical 4-5 month old should be doing, like holding her head up, and she was very floppy.
Isabel’s Story
I was 30 weeks pregnant when I discovered our baby was going to need heart surgery following her diagnosis of Coarctation of the Aorta, as well as a VSD (Ventricular Septal Defect) and three ASDs (Atrial Septal Defects). Our world fell apart; we had never even heard of these conditions before, and I felt terrified.

What are you searching for?

Popular Searches