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DSAM19 – MEET THE MOM – SHIREEN

I am Shireen, an educator by profession ,formerly from a small town of Newcastle and my husband Siddiq, an economist by profession, is formerly from the paradise island of Mauritius. We met at university and married and continued to persue our careers. After a year of marriage we began to plan a family and that continued in vain for 5 years until I sought the help of endless gynecologists, 11 to be precise. It was after 19 years of marriage that I woke up one day and felt a bit of nausea and realized my period was late. This was sometimes the norm in my life until I decided by the end of 5 days to do a pregnancy test- this was the beginning of my little Miracle Ameer Hamzah.
I was already 40 at this stage but battled with severe placenta prévia and was hospitalized 7 times as I bled very heavily. Hospital was like my second home during pregnancy, I was rolled around the house on my office chair my very caring helper.
I had taken all the bloods that were required and the Down syndrome bloods test did come back positive but my gynae suggested that after 40 this usually happens as said to me that everything looked fine with the foetus.
Another doctor friend of ours suggested visiting a neonatologist which we did at 4 months – and he looked at all Hamzahs major organs and said that everything looked fine except for an extra fontanelle which appeared on the skull but he couldn’t confirm Down’s syndrome and suggested that we send bloods to California for further testing and he also confirmed that we were expecting a boy and we were overjoyed as my husband always wanted a little son.
We got back home and discussed the implications of the test if it were positive and we decided right there and then to leave it in God’s hands and pray for what was best for us.
Hamzah was delivered at 36 weeks and the moment the Gynea delivered him, he realized that he was Down syndrome which the Paediatrician confirmed after a few days. We were praying that maybe there was some error as we hadn’t expected that at all. I was just relieved to have a baby all well considering I stood to lose him so many times, but my husband was devastated. I hadn’t seen my husband as happy and as sad all in one day. His major concern was that we were both older parents and who would be there to take care of Hamzah when we are not around anymore.
One has to realistically mourn the death of a normal child at that moment. It’s tough, but what’s so beautiful is that little angel one looks at, and that God chose us to be the blessed parents. It’s a spiritual journey that begins …

What is the hardest part about being a mom of a child born with Down Syndrome?

The hardest part about being a Down’s syndrome mom was that Hamzahs muscle tone was very weak, he would drink very little of his feed, and then the reflux was terrible at the same time. His sugar levels were not stable. Speech therapy and occupational therapy began after 2 days, and we would sit for hours trying to feed him, and then the balance would just be given via a naso gastro tube. This continued for 5 weeks in ICU, followed by doctors we didn’t even know existed. We had his eyes tested by a Peadritric opthalmologist, his heart tested by the Paediatric cardiologist , his hearing and the list goes on …until you breathe a sigh of relief that everything is going to be ok. We went home with the Nasogastric tube after 5 weeks but Hamzah refused to drink feeds and continued to have severe reflux.
After 2 months we had no choice but to have a gastrotomy tube placed in his tummy and a Nissen fonduplication and the that was the most difficult time of my life! Endless problems – leaking stoma, continued vomitting- picked up a viral infection in NICU and had to be hospitalized with severe bronchitis… and Hamzah stopped drinking altogether. All his feeds had to be fed through the tube very slowly using a feeding pump. I would wake up constantly through the night, as he would sometimes aspirate and then that meant bronchitis and hospitals again! For 1,5 years I barely slept. We persevered with all his therapies and his feeds. Hamzah battled to sit as he didn’t have enough tummy time due to the tube and his core muscles were weak. Hamzah began crawling at 1,5 years and that was a huge light we began to see in our dark tunnel.
After completing a religious pilgrimage -Umrah in Saudi Arabia , Hamzah began eating a few teaspoons of food, began walking at 2,5 years and after 3 years we are now tube graduated. God is the greatest and Hamzah is now running about and trying to talk. I am so pleased that for once in my life we can travel without syringes and a bad full of medication and cavillon cream for his Gtube.
The other most difficult part Is trying to enrol Hamzah in a little playschool which brought such painful tears to my eyes when we were turned down by 2 schools in Umhlanga.

What do you do just for you?

I tutor maths in the afternoon as this is my passion and I love working with kids and making a difference in their lives and keeping them motivated and enhancing their love for Maths so I do this just for me!

Favorite guilt pleasure?

My favorite guilty pleasure is shopping! I love dressing Hamzah in the best clothes and buying him every single educational gadget I can!

What would the soundtrack to your life be?

My favorite soundtrack to describe my life would be “you raise me up”

What is the kindest thing that someone has ever done for you?

The kindest thing somebody has ever done for me was the love of a very special friend, who called or messaged me every single day of my difficult pregnancy and was there at my bedside wiping away every tear. This year she turned 40 and her wish as a birthday gift from her husband who has granted it, is to take us all with them overseas for a well deserved break and to celebrate Hamzah whom he children adore.

What does Down Syndrome Awareness Month mean to you?

Down syndrome means love, patience, kindness, hugs, kisses and lots of perseverance, anything is possible when you love somebody so special so much. They have so much to offer – only those who love them can bear witness to this.

If you could change one thing in the world to make it an easier and better place for your child, what would it be?

I would just love to change the mindsets of people who look down upon Down syndrome, educate the masses about it, so that our kids can live in a kinder, safer and loving environment like every other child and grow to be independent and responsible adults.

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