Ivy was diagnosed with numerous heart defects during mum, Robyn’s pregnancy and tragically, she was born sleeping. This is their story:
Our daughter, Ivy Rae, was born sleeping on 19th October 2020.
We attended a scan during our 28th week of pregnancy and the sonographer had some concerns with our daughter’s heart. She referred us urgently to fetal cardiology, where we were seen a couple of days later.
They diagnosed Ivy with numerous severe heart defects: double outlet right ventricle, a ventricular septal defect (a hole in her heart), transposed arteries and pulmonary stenosis.
Each of these heart defects can cause life limiting effects. Since Ivy was diagnosed with several rare heart defects, her life expectancy and quality of life was not certain.
Unfortunately, and sadly, Ivy was born sleeping a few days later.
We spent precious time with Ivy and made memories that we will cherish forever, but the pain of having to say goodbye will never heal.
Following some investigations, a month later we were informed that Ivy had been diagnosed with an extremely rare chromosome disorder called 15q24 Microdeletion Syndrome. This disorder currently only affects 1 in 42,000 people and comes with an endless list of life changing symptoms and side effects, some manageable and some extremely severe.
Unfortunately, in Ivy’s case she suffered from a number of the rarest and most severe side effects.
Our consultants explained that Ivy’s survival, life expectancy and quality of life were not certain due to this chromosome disorder.
Thankfully this disorder is not genetic, it just means that sadly our daughter was beyond the 1 in 42,000 that this could happen to.
Throughout our journey we have had so much support from family, friends and different charities.
We have recently set up a fundraiser in memory of our daughter – The Ivy Holland Fund. Our aim is to raise money and awareness for some of the charities close to our hearts: Forget Me Not Children’s Hospice, Unique – Rare Chromosome Disorders and Tiny Tickers.
Find out more about how we can support you through bereavement here.
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