Down Syndrome Diaries | A Prenatal Diagnosis … A Letter To New Mothers

Aarti and her husband received Niam’s diagnosis while pregnant – I’m always fascinated by these stories as I think I sometimes feel short changed that we were not given the option or information to make an informed decision. Deep down though, I’m relieved we weren’t given the decision to make – Saajan was meant to be in our lives, and I’m so happy now for it – back then, I had no idea what I know now.

I find it heart warming reading stories about those that found out they were pregnant with a baby with Down Syndrome and wished to carry on – sometimes I wonder how my pregnancy and initial days with Saajan may have been different had I known before.

Below, Aarti shares her words to all new mothers who have been blessed with a child with Down Syndrome.

I am writing this letter to share my story, to give you much needed hope and strength. My story starts in 2012, when I had a phone call at work about some test results. I was told that I had a 1:50 chance of having a baby with Down Syndrome. I was a ‘high risk’ pregnancy. I was called into the hospital for further advice and the doctors spoke to me about whether I wanted to find out for certain. They offered me the choice of having an amniocentesis procedure and after a very difficult decision, I opted to have this done. I wanted to know more about my baby so I could be fully prepared.
As I sat in a car park with my husband, I remember receiving the news on the phone. “Your baby has Trisomy 21.” Now, I wouldn’t have known what that was but I had researched a little about it beforehand so I knew what she meant. Why couldn’t she just say Down Syndrome? I hung up the phone and broke the news to my husband who stared in disbelief. We both were shocked. I hugged my husband and we both cried. Cried for the loss of a child that we thought we were going to have. For the next few days and weeks I continued to feel sad and question why this had to happen to me. What did I ever do to deserve this? Why did God make this happen? My husband and I decided not to share this news with anyone except only very close family. I did not want to explain to everyone how I was feeling or what Down Syndrome was. I was not ready to deal with this myself let alone try and speak to others about it. It was a tough time in my life but I got through it.

I started researching more about Down Syndrome. I ordered books and looked at websites to educate myself and I started to feel better. This has happened for a reason and I was going to make sure I was ready to be the best mother I could be. The next few months were a combination of more appointments, tests, MRI scans and ultrasound scans. As well as my baby being diagnosed with Down Syndrome, the doctors had now said that there was something wrong with his brain. I was told many times by a ‘specialist’ doctor that my baby would be ‘severely retarded.’ To hear those words by a doctor made me feel so angry. He spoke about our baby in such a negative way and made us feel like we were crazy to go ahead with the pregnancy. I was offered a chance to abort the baby but as it was so far ahead in my pregnancy, I would have to induce labour and deliver the body! I thought this was disgusting. How could this even be an option? I felt so emotional hearing this. My husband told the doctor that we had decided to continue.
I knew he also wanted to punch him in the face.

When you’re trying to come to terms with the news that your baby will have a disability and then you are faced with the negativity about what life will be like with your baby it’s difficult. No one will ever know what life is like raising a child with Down Syndrome or how it feels unless it happens to them.

Our beautiful son was born at 32 weeks by a planned c-section. As soon as I saw him, it was love at first sight. It felt so surreal. There he was, my little baby boy and he was absolutely perfect! He weighed only 3 pounds and was placed in what looked like a sandwich bag to keep him warm. He was soon transferred in an incubator and taken to the neonatal ward, where he stayed for five weeks. It was a few days later when I actually got to hold him. The nurse explained to me about Kangaroo Care, which was skin to skin contact to help control his temperature and develop our mother baby bond. She helped me place him carefully in my vest and what a wonderful experience it was! I instantly felt amazing and as I looked down at his beautiful little face, I whispered, “I love you.” He responded by moving his head up and it felt like he made a sigh, as to say finally my mummy is here. It was a very emotional experience.

Time has flown by so quickly and I cannot believe that he is going to 5 years old in May! He has been through a lot since he has been born. There are always ongoing appointments with paediatricians, audiologists, ophthalmologists, physiotherapists, speech and language therapists, cardiologists, the list goes on. We have been lucky to have such a tremendous amount of support available to us. In June last year, he had open heart surgery. The worst nightmare for any parent but we couldn’t believe how quickly he recovered. He is such a strong and brave little boy.

At the Royal Brompton Hospital-smiling a few days after his heart operation

He is like any other four year old. He loves chocolate cake and eating almost anything! He loves watching Mr Tumble, dancing to music and likes being cheeky! He has accomplished many things that normal children do but it has just taken him a little longer to get there. He has started school and made friends. He starred as Joseph in his first Christmas nativity play and last month he started taking his first steps!! We are all so proud of him. He has bought so much happiness into our lives. He has a wonderful sense of humour, is lovable, affectionate, sociable and he loves making others laugh. His smile is truly infectious. He is perfect and I wouldn’t change him for the world. It’s not easy off course but when is it ever easy to raise a child?

So to all of you mothers out there, going through similar things, don’t be disheartened or scared or worried. Be happy and be strong and have lots of fun! You are already doing a great job. There is a supportive community of parents out there to help and guide you every step of the way. Every child is a gift from up above. That’s the meaning behind my son’s name, Niam.

Love from a proud mother xxx

 

 

 

For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.