Aisha’s Story

Aisha’s Story

Aisha’s Story, by her mum, Katrina

When I went for my 12 week scan, I was so scared, as I’d already had 4 miscarriages. Suddenly, the nurse said, “I’ll be back in a minute!” And I knew something was wrong. A few moments later, she came back in with a doctor. They told me that the nuchal fold (the fluid on the baby’s neck) was 0.4mm over what is to be expected, and this might indicate that she could have a heart issue. At her 16 week scan, they confirmed her poorly heart, and we were referred to Leicester hospital, where they scanned me at 20 weeks. After that scan, the doctor sat me down and said, “I’m sorry, Miss Gassama. Your daughter has a complete AVSD and TOF which are heart problems normally seen in children that have Down syndrome, Edwards syndrome or Patau syndrome. A child with these conditions will not have much of a life. If you would like to have an abortion you still have time.”

I walked out of the room. At 34 weeks, I had an amniocentesis, to confirm which condition she had. A week later, I went to see the doctor and she said, “I’m sorry. Your daughter’s test has come back positive for Down syndrome.” She also told me it was going to be hard to raise her, as she wouldn’t walk or learn, and would never speak. She said that, with her heart condition, she would be born not breathing and she would weigh less than 5 pound. She warned me that I would have to be induced a few days early, as it would be classed as emergency delivery, and to expect a lot of people there. I remember feeling so alone. Every time I left a hospital appointment, I cried – not because of Aisha, but because of all the doctors saying, “I’m sorry”, and their tilting heads, making it sound like it’s a death sentence.

I felt as if they thought I’d done something wrong by keeping her. I didn’t even know what Down syndrome was! I said to her dad, “Why are they saying “I’m sorry”? Is she going to die? I can’t lose my baby! Why are they saying she wouldn’t be able to do those things? They don’t know the future!” I was so confused, scared and upset for the fact that no one seemed happy. They day she was born she came out breathing. And not just breathing, but screaming loudly, and not weighing under 5lbs, but a massive 7lb 5oz! I remember whispering in her ear, “Let the fight begin, baby girl. It’s us against the world!”

1 hour after she was born, she stopped breathing. She was stabilised, then transferred to Leicester’s Glenfield Hospital, where she spent a week. She came home, then had her first surgery at 3 months old, to shunt her heart valve to help her breathe. I met an amazing Italian doctor at Leicester, who was Aisha’s cardiac consultant. I will never forget him. He was the only person not to say, “I’m sorry!” He kept me updated, all the time and told me Aisha would need life-saving heart surgery, when she around 1 and half. But when she was 9 months old, I woke up to find my baby girl struggling to breathe. I rushed her to QMC where they stabilised her, and sent her straight to Glenfield. I met her doctor there. He took me into a room and told me, “Katrina, you remember that surgery that Aisha will need to try save her life? We can’t wait. We have to do it now. Aisha is going into heart failure.”

I asked him what her chances were. He said that, with her having two serious hear defects, both it wasn’t good. Her survival rate was only 10%.. 15 hours later, she was in ICU. She died twice, but both times, they brought her back. 6 days later she was off her breathing machine and breathing on her own!

Aisha is now 7 years old! She has had 6 surgeries and needs more, but she’s here! Her cardiac consultant was the only doctor that ever showed he cared, and I was heartbroken when he had to move to a different hospital. Aisha has taught me to see the world in a different way! She brought out patience in me that I never knew I had. But, most of all, she taught me how to love unconditionally. She is the most amazing, comical child I’ve ever known. It’s like having my very own comedian!

Her brother is always hugging her and their bond is so strong. This girl can stream from the phone to TV (even at 33, I can’t do it)! She is learning every day at her mainstream school. And she is doing all the things that those negative doctors told me she wouldn’t. She doesn’t just walk – she plays football for Education FC Warriors and loves to dance and sing. Her speech is coming on great and she’s toilet trained in the day. She is loving and crafty and even has a little attitude, just like other children her age! I would never change my daughter, but if I had one wish, it would be for the world to see her like I do – an amazing little girl!

We have met some positive people but also some negative people. But we choose to rise above it! Even today, I still don’t know why everyone was so sorry! For what ?Down syndrome isn’t a disease! It isn’t the worst thing in the world! Down syndrome is not who Aisha is. It just a part of her. Down syndrome is just a condition. Yes, it does affect Aisha, and means that she needs some extra support, but her life is good! If I would have known, back then, what I do now, I wouldn’t have been scared! Down syndrome rocks!