“This is an open letter to a new mother who has had a baby during a global pandemic and just received the diagnosis of Down syndrome.
At 5 a.m. on June 7, having been in labor for nearly a day and a half and dilated, I was told, ‘Your baby girl is 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. I thought, ‘What possibly could have happened to my baby?’ She was taken to critical care. I didn’t get to hold my newborn baby. The moment I had longed for over the last 9 months didn’t happen for me, and I was frightened I wouldn’t get to. The worst thoughts cross your mind and you can’t think of anything else. Did you know one in four breaches are undetected?
Straight after surgery, I was taken to a private room to recover and 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 if she was alive. Bear in mind, my husband was only allowed to be by my side as we were in a global pandemic. Allowing our parents to be there was a sign 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. They said, ‘She may need heart surgery.’ I still remember this 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 it would be the last time I would see her breathing. I had to stay in hospital to recover. My husband, Ravi, left soon after to be by our beautiful daughter’s 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 felt 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 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 bittersweet, as she was so sick they felt it was only right to have her parents there. On many occasions, we were told, ‘Your beautiful daughter may not make it.’ That is 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 you will be in the 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 our child was so sick, it didn’t phase us as much 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, ‘When we tell people about the diagnosis, it’s very important we use positive language.’ Disability in the Indian community is seen to be something to be embarrassed about. I wanted everyone to know 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, during our many pep talks, said: ‘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, what you 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. This 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.
While we were in the 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, but 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 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.
6 months ago I knew nothing about it, and now I can confidently tell you what it’s like to have a child who is 6 months old 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 this, 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 she has to give. We feel so blessed 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 6 a.m.
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 realize 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.”
This story was submitted to Love What Matters by Meena Taggar-Mall of West Midlands, United Kingdom. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more powerful perspectives from special needs moms:
‘Linda, I have news—please sit down.’ The delivery room was hush-hush. ‘She will be a burden to your family.’ Everyone was disgusted I wouldn’t abort her.’: Mom details emotional journey advocating for daughter with Down syndrome
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