My Down syndrome child

by BabyYumYum
Baby Yum Yum - My Down syndrome child
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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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