Tessa: Life with Down Syndrome

When Becky found out that her baby girl had down syndrome, it came as a surprise and she was in no way prepared for what was to come. This is her story.

WORDS CHRISTEL GERALYN GOMES

Tessa Jo Carey, Becky and Dan Carey’s beautiful baby girl was born on Monday, the 15 of August 2011 at 12:34pm. She weighed 2.8 kilogrammes and was 47 centimetres long and was everything Becky and Dan expected and more!
    
She came with only one surprise—down syndrome.
    
“My pregnancy was a breeze. I felt good, looked great and never experienced any morning sickness. Since my husband and I were paying out of pocket for the pregnancy, we decided to forego any prenatal testing and hospital ultrasounds. Instead, we opted for a 3D ultrasound at an imaging centre just to find out the gender. Since my pregnancy was going so well, my doctor was comfortable with our choice,” Becky tells us.
    
The couple had decided beforehand that no matter what results may arise from any sort of test, they would love and welcome the child regardless.
    
This didn’t mean that the couple was in any way prepared for the news. “I was 24 when I had Tessa. I will be honest, down syndrome was nowhere on my pregnancy radar. I just really did not consider it as a possibility.”

Types of Down Syndrome
There are three types of down syndrome—trisomy 21, translocation and mosaicism.
    
Tessa has Trisomy 21 down syndrome; the most common form of the condition, accounting for 95 per cent of all cases. According to Singapore’s Health Promotion Board (HPB), Trisomy 21 occurs due to an error in cell division, resulting in all the embryo’s cells having an extra chromosome 21.  
    
“Down syndrome is the most common genetic cause of severe learning disabilities in children affecting in one in every 700 babies,” states the HPB.
    
When asked to describe Tessa, Becky says, “Tessa, like others living with down syndrome, is unique in her own way. She has her own traits and characteristics specific to the person she is outside of having an extra chromosome. She does experience some developmental delays and physical differences. However, she is intelligent, hilarious and extremely clever. She is very determined and independent, and she works very hard to accomplish new things.”

Accompanying Complications
Like many others with down syndrome, Tessa had some health complications after birth. “Tessa was diagnosed with Myelodysplastic Syndrome (MDS) at around 20 months of age after she battled pneumonia, influenza, and croup all at once. She struggled with a poor immune system since birth, and a hospitalisation of three aforementioned illnesses landed her in the hospital for a week.”         
She explains that Myelodysplastic Syndrome (formerly known as pre-leukemia) is a series of blood disorders that occurs after something disrupts the production of blood cells. “We were told she would either transition to leukaemia in the future or require a bone marrow transplant to treat her MDS,” said Becky.

The Leukaemia Struggle
Sure enough, two months after Tessa’s second birthday, she was officially diagnosed with Acute Megakaryoblastic Leukaemia (AMKL). This led to six months of hospitalisation and three different types of chemotherapy.

“At the time she was officially diagnosed with leukaemia, I had a six-month-old baby girl, an
eight-year-old stepson, and a growing business that my husband and I worked at together.  
To say it was a rough time is an extreme understatement!” said Becky.

Thankfully for the couple, Tessa went into remission. “We just celebrated two years’ remission this July,” said Becky.

Early Intervention
Tessa was lucky enough to have access to early intervention therapy at three months of age. According to the NDSS, “Early intervention is a systematic program of therapy, exercises, and activities designed to address developmental delays that may be experienced by children.”
    
“Tessa has received speech therapy, occupational therapy, and physical therapy from infancy through early childhood. She still currently receives all three therapies through elementary school,” said Becky.
    
Tessa’s therapy services were in-home based until she turned three years old, after which she transitioned to school. “Early intervention services for Tessa were amazing. Because of these services, she was able to move forward with typical childhood development by having her needs better assisted. I am still so grateful for the experiences we had with early intervention and I was able to understand her needs more completely as well,” Becky quipped.

Tessa Today
Today, Tessa thrives in a traditional elementary school, not one for special needs children. “She is in the same classroom with her typical peers. Tessa really thrives in this environment. This past year, her teachers told us that she was a great peer model on multiple occasions. She pushes herself and strives to do what her peers are doing. She receives her therapies daily while at school and she thoroughly enjoys school. We are so pleased with her experiences at school,” said her proud mum.

Becky’s Boundless Positivity
Becky’s positivity is nothing short of inspirational. When asked what was hardest, she said, “Watching her go through treatment for cancer was definitely the hardest part. It is unlike anything I have ever experienced.”
    
However, life is good for Becky now. “It has been a long time since I have thought about down syndrome. When she was born, a fellow mum told me once that one day I would wake up and not think about down syndrome. That I wouldn’t see it when I see her and that it would fall farther down the line in my thoughts. And she was right. Many days I do not think about it. But there are still fleeting moments where I do. It can be her mannerisms, the way she speaks, a report from school, the way she patiently sits at the doctor, her birthday, a quick glimpse in her eyes... And I wonder about her future, and what it might look like. But then I also look at her and wonder what I was ever worried about.”
    
Overall, Becky couldn’t be prouder of Tessa. “She is simply marvellous. Her personality is everything I hoped for in a daughter: spirited, humorous and kind. Tessa does everything typically developing children do, just at her own pace. She especially loves singing Taylor Swift songs and, like many little girls are, she is captivated by Disney princesses. Yes, there are hurdles and obstacles, but she faces them bravely. There are hard days. But the good days far outweigh the bad days. She doesn’t just climb mountains—she moves them!”
    
More than anything, Becky hopes that Tessa “will be seen as a person, not a diagnosis”.

Working for a Cause
With another mum, Becky now works on creating the ‘Down Syndrome and Cancer Coalition’, an organisation aimed at helping the down syndrome community by supporting caregivers. She has also published a book titled 47 Strings: Tessa’s Special Code, a children’s picture book on how she and Dan explained Tessa’s diagnosis to her older brother. “It explains down syndrome in a kid-friendly way that is easy to understand, and gives kids a positive takeaway they can feel good about,” she says.

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