Photo: Vanguard Diary Photography
Photo: Vanguard Diary Photography

'After birth, my doctors noticed my baby was different'

MY third pregnancy was a surprise, to say the least. My son was only six-months-old when my cereal started to smell off and that nauseous feeling started to rise in the back of my throat. I didn't even need a test to tell me that I had another baby on the way. After a few days of wondering what I had gotten myself into (three under five, eeek!) I started the exciting phase of planning and nesting.

At 12 weeks along my doctor asked if I wanted a Nuchal Translucency scan, after assuring him that I knew the multiple conditions it tested for, I told him I didn't want it. We agreed that my risk was low and we got the OK to continue on as per normal without it. I had a great pregnancy, the easiest of all three. I could feel she was much smaller than the other two, which was a relief after my 98th percentile boy. I remember wishing for a red head every day, a little ginger to join my family.

One of the first decisions I made was that I wanted to try to give birth without an epidural, and I wanted a water birth. My student midwife was so supportive and really listened to my wishes my entire pregnancy. We agreed that gas would be my first point of relief after trying the bath tub. We talked about birthing positions and I let her know that with me once I hit 5cms she'd need those gloves on because I would be pushing within 10 minutes.

On September 2nd I was two weeks out from labour. My birth photographer, Tina, was coming to meet me for the first time and my oldest two were out for the day. Still to this day I maintain relaxation put me into labour. After our meeting, Tina told me to call anytime day or night to get her there in time. Little did she know that at 10 pm I would start to get some tightening. I headed to bed for some rest and told my partner, Adam, to expect a wake-up call.

By 3 am I was timing contractions and at 4.30am it was time to head off to the hospital, but not without stopping past a convenience store (so Adam could get supplies, of course).

At the hospital, I went through my birth plan with the midwife on duty and jumped in a bathtub for my labour. A calm washed over me with the warmth of the water... Until 7.45am - and five centimetres - when I was calling for an epidural. By 8 am the anesthesiologist walked in only to hear me announce that I was ready to push. It was with one massive push at 8.08am that my waters broke and like a rocket, my baby girl came flying into the world. She nestled to my chest with a calm look on her face and seemed to settle quite quickly.

It was then I noticed her colour. After a few moments, she was lifted off my chest and placed on oxygen. Questions and statements mingled together in a blur. "Dusty colour" "oxygen at 68" "what was her nuchal result?"  "She never had the nuchal" "let the nursery know we are coming" and so on. The room went quiet as my baby girl was taken away with her daddy in tow and assurances to me that she would be fine.

I lay there in my after-birth "glow" wishing for a shower. I called my mum to let her know the baby was here and her big sister and brother could come once she was back from the nursery. The first person to come back to the room was Adam and I knew looking at him then that something was wrong.

His eyes were red and something just didn't feel right. It was only later that I would hear how he was alone, in a nursery filled with other families, while his newborn was hooked up to machines when the paediatrician broke the news to him. He came back to tell me and support me, but I couldn't really focus on what he was saying.

The first thing I remember hearing was "down syndrome". I didn't hear much after that. Something about epicanthal folds, sandal gap toes and, worst of all, a heart condition.

"We can do this," I said. But in my mind, I was screaming, "WHAT DOES THIS MEAN?"

I didn't know much about Down syndrome. Would she work? Would she learn? Would she walk and talk? Would she be happy? But most importantly is her heart ok? Is she ok? Those early days were a blur.

Our baby girl needed a name and after a heated game of scissors-paper-rock, Claire was announced the world. Over the course of 15 days, Claire was weaned off her oxygen, weaned of her nasogastric feeding tube, a serious heart condition was ruled out, thyroid tests were done, blood draws, hearing tests and daily rounds. We were booked in for physio, eye testing, another hearing test and an echo. And through it all my cherub was so patient and sweet.

It was also over those 15 days that we formed a close bond with the family in the bed next to us, who also had a surprise T21 (Trisomy 21, the medical term for Down Syndrome) baby on their hands. Claire and Jesse-Ray would roll to face each other in their sleep, time their feeds to be at the same time, set off alarms in sync, move to lower care side of the nursery together and of course go home on the same day.

I spent any time I wasn't feeding or changing Claire, searching. Searching for information, for support, for stories. I researched funding, routine health screens, therapies and support groups. I searched and I searched. I found Joelle Kelly and T21 Mum Australia. Her daughter Josee was two-years-old at the time. Joelle became my unofficial mentor in all things T21. She directed me to other mums, she sent me links and she supported me. It was her, along with countless other amazing women I know, who helped me realise that I can do this.

It is now nearly two years since Claire came into my world. It is two years since I wondered "why me?" It is two years since my world was flipped on its axis. Two years ago I thought that all I wanted was for Claire's down syndrome to go away. This is not something I am proud of. Claire is an amazing little girl. She's the kind of kid who holds strangers hands on the bus home, who signs "beautiful" to aquarium staff, who is determined to walk everywhere even if she will fall. She loves dogs and signs for them constantly.

Claire has made me a better mother, a better person and a more passionate human. In two years I have started to run social events for T21 Mum Australia and adminning the various groups. I have made true friendships with women Australia wide and celebrated births and milestones along the way. I have come to love the community I have been welcomed into. I have come to love down syndrome.

This article appeared on Kidspot and has been republished with permission.