Positive about Down Syndrome: Our story so far
An open letter to a new mother who has had a baby during a global pandemic and just received the diagnosis of Down Syndrome.
Hi there, I’m Meena Taggar-Mall and I am a wife and a first time mother to a beautiful girl called Anoushka.
At 5am on 7th June having been in labour for nearly a day and a half and dilated I was told my baby girl was in a breech position. I was rushed into an emergency C section. Within 25 minutes my baby girl had entered the world but my husband and I had no idea. We didn’t hear a cry and all we saw was a room full of doctors. At that moment I knew something was wrong. My baby girl was taken from me. All I saw was the top of her head. My heart sank and I couldn’t stop crying. What could have possibly happened to my baby? She was taken to critical care. I didn’t get to hold my newborn baby. That moment I had longed for over the last 9 months didn’t happen for me and I was frightened that I wouldn’t get to. The worst thoughts cross your mind and you can’t think of anything else. Did you know 1 in 4 breeches are undetected?
Straight after surgery I was taken to a private room to recover, a few hours later my husband and I were called down to intensive care. The hospital was kind enough to allow our parents to come see our baby girl. This was upsetting as it felt it would be the first and last time they would see her, as we weren’t even sure that she was alive. Bear in mind that my husband was just about allowed to be by my side as we were in a global pandemic, allowing our parents to be here was a sign that our daughter wasn’t well.
My heart was broken. I saw my baby in an incubator covered in wires and a ventilator attached over her mouth. I could barely see her face. I had no idea what my daughter looked like. I held her hand for a short while as she had to leave the hospital to go to Birmingham Children’s.
We were all taken to a room and we were told just how sick our baby was and that she may need heart surgery. I still remember that moment with so much pain and I cry every time I think back. We named our daughter Anoushka before she left. The meaning of her name is “grace”, it felt right and we knew she deserved to be named before she left. Having to say goodbye to my baby was the hardest thing to do. I was so scared that it was the last time I would see her breathing. I had to stay in the hospital to recover. My husband Ravi left soon after to be by our beautiful daughters’ side as she fought for her life. Having the two people I loved the most not be with me is something I struggled with. I felt so empty and that feeling of something missing from me. I still have separation anxiety about it.
Having a baby during the pandemic is hard, having a sick baby during a pandemic is something else.
When we were at the Children’s hospital initially only one parent could be by Anoushka and then when we went to the Neo Natal Ward locally they were kind enough to let us be by Anoushka all day as long as we wanted. It was bitter sweet as Anoushka was so sick that they felt it was only right to have her parents there. On many occasions we were told our beautiful daughter may not make it and it was something no parent is prepared to hear. When you have antenatal classes, your worst-case scenario is having a c section, you really do not imagine that you will be in hospital praying for your daughter’s life.
When my husband and I looked back, her diagnosis for us was a secondary thought. We were so upset that our child was so sick that it didn’t phase us as much that she had “suspected trisomy 21” we knew she did as we could see it. We just wanted our baby to survive so we could have a chance at giving her a loving environment.
The first thing I remember is telling our parents that when we tell people about the diagnosis, it was very important that we use positive language. Disability in the Indian community is seen to be something to be embarrassed about. I wanted everyone to know that I wasn’t someone to pity and wasn’t ashamed of the diagnosis. The news of her Down Syndrome wasn’t the first thing we told the world. The first thing we said was how brave and how proud we were of our amazing resilient daughter and “oh by the way” she also has Down Syndrome. I still remember what the Director of Neo Natal said during our many pep talks: “before anything Anoushka is a baby girl with a great personality and then she is a child with Down Syndrome.” I think if Anoushka didn’t have such a tough start to life we may have been more upset about the diagnosis. Everyone has their own reaction and no one has a right or wrong one. However you may feel is validated and what you feel is your truth. To any new parent who has had an at birth diagnosis or even an antenatal diagnosis, how you feel and what you do is completely justified.
No one goes into a pregnancy hoping for a disabled child, however when you are faced with the news unexpectedly, just remember this is your child, this child has grown in you, they are a part of you and this child is exactly who they are meant to be, all you can do is give this innocent child an environment where they feel unconditional love. That love may not come straight away as you process the news but you will look back and you will be so in love with this perfect little human.
Whilst we were in hospital, we didn’t really look into Down Syndrome. We were given some packs arranged by charities but on the whole we started researching more when Anoushka was out of danger and we knew she would be coming home. There were many social media groups and I didn’t join until I felt I was ready. You will always know when it’s the right time for you to learn more and be involved in the world of Down Syndrome. One thing I do know is that this community welcomes you with open arms, it’s like a hug when you need it most. I’m still not 100% comfortable with meeting parents with children who have Down Syndrome, but I know I will get there.
Six months ago I knew nothing about it and now I can confidently tell you what it’s like to have a child and what I need to do for her, what terminology to use and for me that’s enough right now. I try not to worry about what difficulties we might face as Anoushka gets older, if I do that; I will miss out on all the great things she is doing now. Being present for your child is the best gift you can give yourself.
Anoushka gives us the best cuddles, you can feel the love that she has to give. We feel so blessed that our ray of sunshine is with us at home. She’s really turning into a chatterbox- in fact she’s our daily alarm clock at 6am. Her almond shaped eyes sparkle every time she smiles and she most certainly brightens up our day.
Anoushka has taught us many things; patience, resilience, what unconditional love feels like but above all she helped us realise what is important in life. For us, it’s finding happiness in the small things, like having a child who defied all the odds to be with us, having a loving family environment and compassion for each other.
Our dear Anoushka, may you continue to shine as bright as you are, never dull the sparkle you have been gifted.
We love you.
Meena is a mother based in the West Midlands. She documents her journey with Anoushka on instagram and you can follow them @anoushka_and_me .