When I fell pregnant at 43, my husband and I chose not to undergo the usual chromosome testing. We believed our baby was meant to be part of our story—just as they were. That’s how the journey with my Down syndrome child began. It hasn’t always been easy, but it has been filled with meaning, growth and unconditional love. Every day, my Down syndrome child teaches me about resilience, joy and the beauty of embracing life exactly as it unfolds.
Verity Farrell and her late husband decided not to have the standard chromosome tests when she fell pregnant with her fifth child at the age of 43 years. She already had four healthy children, all delivered by waterbirth with the assistance of skilled midwives.
Verity intended to have another water birth for Rebecca, even though her body felt tired and the pregnancy long, and this baby did not seem to move as much in utero as her four siblings had done. This is Verity’s story…
My son was born on a Christmas Day and Rebecca was due on the Easter weekend of 2007. The coincidence led to some surprising introductions, as I could not find a doctor willing to work or even be on standby on a public holiday.
But I tearfully convinced the midwives I could not do a natural birth, so they put together a team of specialists who would be available on Easter morning.
When she was born, the doctors were panicked by her low heart rate, while my husband and I stayed calm and tried to absorb the shock reactions of the people around us.
As Rebecca was lifted out of my womb the paediatrician announced to the theatre: “I see Downs symptoms here!” Much excitement followed as nurses demanded to know if I’d been tested for a Down syndrome (DS) child, or been offered my rights to terminate the pregnancy.
Rebecca had a large hole in her heart, which is typical of 50% of DS babies, and other cardiac complications. She was rushed to NICU for resuscitation, and we were informed that she would remain on life support until a high-risk operation at 23 weeks could be performed.
If successful, this operation would be followed by open heart surgery when Rebecca was three years old to permanently patch the holes.
“Early intervention in the form of physiotherapy, speech and occupational therapy is imperative to the functioning of a DS child, but I strongly recommend early socialisation too.”
Secretly, while strapped to the gurney, my heart leapt at the thought of having a ‘different’ child. During a fun 3D scan 32 weeks into pregnancy, I stared at her picture and told my husband I suspected she had DS.
Regrettably, we told no one, so her Trisomy 21 diagnosis still came as a big shock at birth. Her siblings, in particular, were very anxious, desperate for information and the assurance that their baby sister would live.
My advice to a new mother of a DS baby is to simply accept the challenge and enjoy every milestone as you would enjoy those of a typically developing child. Raising Rebecca has been great fun and more rewarding than anything I’ve ever done in my life.
A DS child will have developmental delays, but these can be wonderful learning experiences for everyone involved. In many ways it is easier to raise a child with Down syndrome, since expectations are typically low and very basic – and Rebecca has met and exceeded all of them.
Nine years later, we have complete assurance that Rebecca will live a long life. She has speech, physio and occupational therapy to overcome low muscle tone and assist her participation in mainstream schooling.
Our loving and lively youngest daughter has given us much pleasure, joy and also comfort in time of loss and grief. She has overcome physical, social and intellectual barriers and is an inspiration to everyone.
Early intervention in the form of physiotherapy, speech and occupational therapy is imperative to the functioning of a DS child, but I strongly recommend early socialisation too. Treat your child as a ‘normal’, typically developing child. Never lower your expectations.
Rebecca is a central part of our family. We never hide her away from society, but teach her the skills necessary to function in it. We encourage her constantly and are very proud of all her accomplishments, particularly her participation in Grade One at a mainstream government school.
Down syndrome people seem to engender a love and friendliness that are sorely missing in our world today. Against the odds and discouragement of a society which frowns on difference, I maintain that my vision that Rebecca will be a fully-functioning, contributing member of society one day.
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FAQ’s: Down Syndrome
What is Down syndrome?
Down syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21. This additional genetic material affects a person’s physical development, learning ability, and can be associated with certain medical conditions.
How common is Down syndrome?
Down syndrome occurs in approximately 1 in every 700 live births worldwide. In South Africa, it’s one of the most common chromosomal conditions, with thousands of children and adults living with it.
What are the signs and characteristics of Down syndrome?
Children with Down syndrome often have certain physical features such as a flatter facial profile, upward-slanting eyes, a single crease across the palm, and low muscle tone. However, every individual is different, and abilities vary widely.
Can Down syndrome be detected during pregnancy?
Yes. There are screening and diagnostic tests available during pregnancy. These include non-invasive prenatal screening (NIPS), nuchal translucency scans, and diagnostic procedures like amniocentesis.
What health problems are associated with Down syndrome?
While not all individuals experience the same issues, some may have heart defects, hearing or vision problems, thyroid conditions, and an increased risk of infections. Regular health check-ups and early intervention can manage many of these concerns.
Can children with Down syndrome go to mainstream schools?
Many children with Down syndrome attend mainstream schools, especially with early intervention and tailored support. Others may benefit from special education depending on their individual needs and learning profile.
How does Down syndrome affect learning and development?
Children with Down syndrome typically have mild to moderate intellectual disability. However, with the right support, therapies, and education, they can achieve a wide range of personal and academic milestones.
Is there a cure for Down syndrome?
There is no cure for Down syndrome, but early intervention, education, and supportive therapies (like physiotherapy, speech therapy and occupational therapy) can significantly improve outcomes.
Can people with Down syndrome live independently?
Many adults with Down syndrome live semi-independently, hold jobs, and enjoy fulfilling relationships. Support levels vary depending on individual needs.
Where can I find support if my child is diagnosed with Down syndrome?
In South Africa, organisations such as the Down Syndrome Association Gauteng and the National Down Syndrome Society (NDSS) offer information, counselling and support networks for families.
References:
- Down Syndrome South Africa (DSSA)
- NHS – Down’s Syndrome Overview
- CDC – Down Syndrome Facts
- Global Down Syndrome Foundation
Disclaimer: This information is provided for educational purposes and is not a substitute for professional medical advice, diagnosis or treatment. If you have questions about your child’s health or development, please speak to your healthcare provider or paediatrician.
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