Millie’s story so far
written by mum Emma
At my 20 week scan we heard the dreaded news “I can see an issue with the heart”.
At that moment our whole world came crashing down and my thoughts straight away were, “Will she be ok?”, “What will happen now?” and “Why is this happening to us?”.
The type of heart condition Millie was diagnosed with was Atrioventricular Septal Defect (AVSD).
That was when we were also told that with the condition there was also a 50% chance of Millie having Down syndrome.
We had the tests done and it was confirmed that Millie had Down syndrome.
It was a hard time for us, but we knew we would be keeping Millie regardless of her diagnosis.
Everything seemed to happen so quick. We were in Leeds the very next day to see the team, who were fab. We felt reassured that even though Millie had an AVSD it could be fixed.
Roll onto Millie being 11 months old. The day had finally come for her first heart surgery – 17th May 2018.
It was the worst six hours of our lives waiting for the phone call to say that all was ok. The operation all went well, and we can’t thank Mr Jaber and his team enough!
It was then that Millie received her first Katie Bear from Children’s Heart Surgery Fund.
Millie did have more open heart surgery, on 14th September 2020. Again, this was by the amazing Mr Jaber and his team.
“Millie is doing so well in school and she doesn’t let anything get in her way!”
Millie got a second Katie Bear which was a total surprise and so lovely.
After both surgeries, Millie bounced back and was back to her usual self within days!
She is doing so well in school, and she doesn’t let anything get in her way!
Millie is now five and has been on quite a journey already. She does need to have further surgery, but we know she will be in good hands and the worries that we have can be pushed to the back of our minds until that day comes.
Did you know – approximately 50% of all infants born with Down syndrome are also born with a heart defect?
A huge thank you to heart mum Emma for sharing Millie’s story to raise vital awareness of Down syndrome and congenital heart disease.
13 babies are born with heart disease every day in the UK, and on average around 400 children from Yorkshire, the Humber and North Lincolnshire need urgent open heart surgery at the Leeds Congenital Heart Unit each year.
CHSF are there to support each and every one of them, but are wholly funded by public donations, from people like you.
MORE REAL STORIES
Blake
Blake's mum, Chelsea, said: “My partner Matthew and I found out that Blake had something wrong with his heart when he suddenly was really poorly on 30th September 2022. “We took him to Chesterfield Hospital to be seen and Matthew and I were told he had sepsis,...
Albie’s story
written by mum, Abigail"This is Albie. He is 6 and a half months old. At his 8 week check up, they discovered that he had a heart murmur. "After being referred to Leeds General Infirmary at four months old, we learnt that Albie had Tetralogy of Fallot and will need...
Bonnie
Bonnie is two years old and was born with Atrial septal defect (ASD) and Ventricular septal defect (VSD) which were surgically repaired in Leeds at age 4 months. She has just celebrated her second heart day on 4th May! Mum Charleigh tells us about Bonnie's CHD journey...