My Son and I Both Had 22q 11

June 28, 2014

I am 26 years old and I was born with a cleft palate and had surgery at six years old, I also had ongoing sickness throughout childhood and had had learning difficulties in school.

After years of seeing doctors nothing was picked up until I had my son, Ciaran. He is almost six years old. He was born with a rare heart condition known as Pulmonary Artesia with VSD and that is when doctors first mentioned 22q11.

We were tested and both positive for 22q11.

It was a big shock but also answerd a lot of questions. Ciaran had alot of problems and had his first open heart operation at one month old, he struggled to feed and gain weight and spent the first year of his life in hospital due to infections.

He was transferred to Birmingham, England where he had two more open heart surgeries and many more catherizations. He is due for his fourth open heart operation and despite also having speech and language difficulties he is excelling in school and comming on great!

I have recently ran two half marathons and passed my level two Diploma in childcare, this means I can go on to level 3 in Special needs.

Yes, sometimes it does get tough, but you have to keep going to get where you want to be.

Stay Connected

Sign up for updates straight to your inbox.