Upwards with Downs
Registered charity no. 1158649
Jasmin's Story
I was 22 weeks pregnant when I found out my daughter had a heart defect then at 23 weeks, I got that call, everything was a blur from there it was as if I was dreaming and couldn’t wake up. One day I was fine the next I hated the world it wasn’t fair why me, why my baby, what had I done wrong. I was told on a Thursday evening around 5.30 pm and the midwife said I had till Monday to decide to terminate. I looked into all my options but termination I just couldn’t do. I then started to pretend everything was ok, so I met a local support group called Upwards with downs at our local children’s centre where I met lots of mums and their children. I remember being taken into the room crying my eyes out and if I’m totally honest I could not bring myself to look at these children. I went back every week hoping it would help but deep down it made me hide my fears grow, I would pretend I was ok but deep down I was not, I still hated the world for giving me a child like this.
Then at 30 weeks I was told the hospital got it wrong I thought great she hasn’t got down syndrome but of course that was not the case, in fact, the heart defeat was a lot rarer than they thought and the chances that I would carry her to term was decreasing, even if she did survive birth she would need open-heart surgery straight away and the outcome was slim. So, I carried on in my own little bubble now feeling guilty that I should have terminated, she isn’t going to survive anyway so what’s the point.
Every 2 weeks I had check-ups at UCL hospital. They planned for me to be induced there at 38 weeks, so we were near GOSH for her to go straight for surgery. When I reached 36 weeks the doctor said her heart defect hadn’t changed, it wasn’t better, but it wasn’t any worse either. He said I may get to meet my baby which completely shocked me! I was arranging funeral songs in my mind and now I might get to meet her.
Jasmin was born before her induction date by 2 days, we then spent 10 days at UCL Hospital where she amazed doctors. She did not need surgery straight away and in fact, GOSH were so happy with her they said see you in 4 weeks' time. Jasmin got to 13 weeks before needing open-heart surgery, she was given a feeding tube because she tired too quickly... At 10 months old I started to give her food like any other baby, and this was our turning point, Jasmin loves her food and continued to do so well. Yes, we have had setbacks she had to have her chest bone reset when she was 2 years old then got a nasty infection but once again, she bounced back so quickly. I will say these first 2 years were really hard. Shortly after her chest reset, she had her tonsils out and most children cry and won’t eat but not my Jasmin she came home eating Doritos, she is crazy.
Last September she started mainstream school and loves it so much she comes home and pretends to be the teacher. Her learning and understanding are not like most typical children of her age, but she knows what she wants, and everyone understands her. Her speech is amazing, and this is thanks to Upwards with Downs who provide subsidised private speech and language sessions for their members. Jasmin has a session once a week during her school day.
Jasmin has joined in with everything she has been asked to do she loves singing and dancing and is so caring towards others. Her relationship with her siblings is amazing they don’t treat her any different which has brought her on leaps and bounds. She rules this house but is so funny in doing so.
So, when I was pregnant this is what I was told;
Doctors told me to terminate
Doctors told me she would not walk
Doctors told me she would speak
Doctors told me her quality of life would be limited
Doctors told me she would be a burden to her siblings
Doctors told me she would never do sports
YET
Jasmin walks
Jasmin talks
Jasmin’s life is fantastic
Jasmin siblings love her to bits
In 2019 Jasmin took part in her first-ever sports days day at mainstream school.
Jasmin has received 2 class assembly awards while being in reception the first one was for her caring nature. The second one was for her learning.
Jasmin needs more heart surgery in 2020, 5 years ago I would have dreaded this news but bring it on WE’VE GOT THIS !!