Feature

Mum talks about having a daughter with Down syndrome

Josee Kelly with her dad Lewis.
Josee Kelly with her dad Lewis. Alistair Brightman

WHEN I received the initial diagnosis that our baby had Trisomy 21, or Down syndrome, 13 weeks into my pregnancy, I thought our life as we knew it was over.

I imagined that we would never be able to do all the things our family enjoyed and was overwhelmed by the fact that I would be raising a child with a disability.

Josee Kelly at the age of 14 months.
Josee Kelly at the age of 14 months. Alistair Brightman

Our life with Josee has been enhanced and already she has taught us so much in her short time on Earth.

Having a prenatal diagnosis meant that I could prepare myself and others for Josee's arrival and receive additional monitoring.

However, it also gave me plenty of time to research Trisomy 21.

Unfortunately much of the information I found was pessimistic and outdated, often focusing on all the what ifs.

Contributing to this was the fact that in the early stages of my pregnancy Josee had hydrops, a condition where extra fluid accumulates in the foetus and we were told to expect her to die in utero due to heart failure.

I became anxious throughout my pregnancy as I read, and was told, of all the possible issues our baby could have as a result of having a third copy of the 21st chromosome.

I finally stumbled across an online American forum for women facing a prenatal diagnosis and this became my lifeline throughout my pregnancy.

Being able to connect with women in a similar situation made me feel less alone and directed me towards helpful and positive resources.

I vowed once Josee was born that I would start an online support group for women with a prenatal diagnosis.

Today this group has one hundred women from across the world who share experiences and support each other as they navigate through their pregnancies.

Josee Hope was born on January 10 in Hervey Bay Hospital, 10 days overdue and weighing in at a hefty 8lb 10oz.

Joelle Kelly with her daughter Josee, who was born with Down syndrome, at nine weeks.
Joelle Kelly with her daughter Josee, who was born with Down syndrome, at nine weeks. Alistair Brightman

Josee never needed oxygen or nasal gastric feeding.

Instead she was completely breastfed and was taken home within five days - a stark contrast to what we were expecting.

We were overjoyed.

Josee's main issues in the early months were around feeding and weight gain.

Due to her hypotonia (low muscle tone) she would often fall asleep during feeding as she lacked the strength to maintain vigour for each feeding session.

She was then fed expressed breast milk after each breastfeed via syringe, cup or bottle for the first five months.

These "comp" feeds gradually diminished to two or three times a day until she reached nine months when she became exclusively breastfed.

All that extra effort was rewarded and I am proud to still be breastfeeding her.

Breastfeeding a baby with Trisomy 21 has many benefits for speech and language development as well as all the regular immunological benefits too.

Josee began speech therapy from birth and physiotherapy from five months.

She attends therapy about once a fortnight to once a month and also attends a local early childhood playgroup for children with additional needs. These sessions have all contributed positively to Josee achieving milestones in her own time.

Josee Kelly with her mum Joelle, dad Lewis, brother Max, 10, and sister Tallara, 12.
Josee Kelly with her mum Joelle, dad Lewis, brother Max, 10, and sister Tallara, 12. Alistair Brightman

She reaches them when she is ready and we celebrate every single one.

Currently she scoots around on her belly and has started sitting independently.

She also likes to weight bear by standing up in your lap or propped up against the couch.

Josee loves to get your attention and will smile and stare at you until you acknowledge her.

She understands many basic signs and is beginning to use sign language herself to communicate.

She can wave and clap and recognises her name and also enjoys dancing along to familiar songs.

I believe it is important for Josee to hang out with typical babies too as she learns by watching and copying their actions.

Josee Kelly riding on the shoulders of her dad Lewis.
Josee Kelly riding on the shoulders of her dad Lewis. Alistair Brightman

I am so thankful that Josee has made it through her first year with wonderful health and no hospital admissions.

When I was pregnant I believed that our lives would revolve around medical professionals and hospital stays. The words "healthy" and "Down syndrome" are not often heard together, but they should be.

We have made connections all over the world with hundreds of families who have a child with Trisomy 21, most of whom have great health.

Today, with early intervention and medical knowledge, children with Trisomy 21 are positively changing society's perceptions and attitudes about this syndrome and living long and fulfilling lives.

If you had of told me when I was pregnant that this is life with Down Syndrome I would not have believed you.

Our lives are more ordinary than not; our children still argue, housework and homework needs to be done and we get tired from raising three children.

All regular every day stuff! But in amongst the ordinary lies a little girl with a "little bit extra" who makes our lives extraordinary.

My son said the other day that he never knew he would love Josee as much as he does and he also never knew how much he would want to play with her.

My daughter enjoys teaching Josee new things.

Josee has taught her siblings, and us as her parents, the important things in life such as love, patience, faith, hope and compassion.

Josee is Josee. Yes, she has Down syndrome and we are not denying this, but we don't allow her disability to define her as a person.

This adjustment to "person first" language respects those who have a disability and we encourage others to put the person before their disability.

Topics:  daughter, down syndrome, family, mum, torbanlea



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