A story of a mother's love for her child with down syndrome.

Each of my boys is special. Jeffery Owusu, my eldest, is athletic and handsome. Nudging six foot two, his 16-year-old frame is built for sprinting and shooting hoops. However, his most valued talent is for pulling things apart and putting things together, and he is highly sought after by friends and family on camping trips and in the aftermath of an Ikea shopping bender.

Douglas Asiedu is my middle son. At six years old, he sports a mop of golden brown ringlets and eyelashes that have the power to turn supermodels green with envy. I’m told that in Ghana, West Africa, his name implies an inborn gift for public speaking. True to his name, he started talking well before baby boys are really meant to talk, and has barely stopped since.

Okoe Leonard is my third born. His African name, oh so creatively, means “firstborn twin”.  If I’d known then about the medical profession’s obsession with labeling twins according to their birth order, I might have put my foot down and insisted on calling him something different; something that better reflected his good nature, generous spirit and wild sense of humour. But Okoe it was and Okoe it still is, and I have to admit that its strength and lack of pretension suit him well.

Okoe was welcomed into the world by an eager audience of anaethetists, obstetricians, paediatricians, midwives, researchers and medical students, all craning their necks to get a good look at a “natural” twin delivery. That this “natural” birth took place in an operating theatre (“just in case”), and was assisted by enough sedatives to keep a dealer in business, didn’t seem to dampen their enthusiasm.

I don’t remember being allowed to hold Okoe while we were still in theatre, but I do remember squealing with pleasure when I saw him in person for the first time. Okoe was the plumpest, prettiest newborn I had ever laid eyes on. Weighing in at almost four kilograms, he was a hearty size for any baby, let alone a twin. He had a creamy complexion, dimpled cheeks and exquisitely shaped eyes that implied he was from Asian rather than African descent. I was so captivated by his loveliness that at first I didn’t notice the concerned looks on the faces of the hospital staff as they fussed and hovered. The only thing able to break my infatuated gaze was the announcement that Asanti William, my fourth son, was finally on the scene.

Asanti was small and fragile, compared to his twin brother. It was as though he wasn’t quite ready to come yet, but didn’t have a choice – after all, it is the firstborn twin that sets the pace. He reminded me of a little baby bird that had fallen from its nest – lost, frightened and vulnerable. As I looked from one baby to the other, it hit me that life had changed forever. Not only was I now responsible for two more little lives (a responsibility I wasn’t sure I was ready for), it occurred to me that my plump pretty Okoe had Down syndrome. Bliss turned to panic in an instant, but I told no one. Perhaps I thought if I didn’t say anything out loud, the doctors wouldn’t notice, and Okoe and I could quietly go about our lives as we had planned.

A short while later, while I was alone in recovery, the medical onslaught began. My husband, Yaw, and beloved friend, Beth, accompanied the babies up to our room, while I waited for feeling to return to the lower half of my body. The paediatricians who had been there at Okoe and Asanti’s birth drew up alongside my trolley. “Congratulations, Fiona, your boys are lovely,” they said. “I know,” I smiled, wishing they’d just go away. “We don’t want to worry you, but we have to tell you that when we were examining Twin One, we noticed that he had a few characteristics that are often seen in babies with Down syndrome. It might not be anything to worry about, but we were wondering whether there was any prenatal indication that suggested a risk of Down syndrome?” “No, I don’t think so,” I lied, wishing they would lower their voices.

The truth was that 23 weeks into my pregnancy, a routine ultrasound picked up that Twin Number One (my Okoe) had hydronephrosis, a blockage in his ureter that caused his left kidney to swell.  No one was overly worried about the condition. What it meant was that Okoe would need a series of tests fairly shortly after he was born. If the blockage was still apparent, he would probably need a stent or at worst, surgery to repair it. A bother, for obvious reasons, but not life-threatening, especially since he had another perfectly good kidney. However, it was also pointed out to me, rather brutally, that hydronephrosis is also a marker for Down syndrome.

The senior sonographer, who made it clear that she thought I was naive and irresponsible for not succumbing to screening tests early in my pregnancy, then insisted that I would now be made to have an amniocentesis, and then proceeded to give unwanted and unsolicited advice about the pros and cons (medically speaking) of having a “foetal reduction” in advanced twin pregnancy. Horrified, I left the hospital vowing that I wouldn’t tell anyone about her suspicions. To my relief, none of the specialists who provided follow-up care ever mentioned a risk of Down syndrome or the need for further testing. Silence was proving to be an effective strategy.

For the next few days after the babies were born, we endured twice-daily visits from the senior paediatric consultant and her entourage of registrars and student doctors, efficiently pointing out the various physical features of Down syndrome – the low muscle tone, the placement of his ears, the crease across his palms, and so on. Her greatest concern, she announced to all and sundry, was for his heart.  “One in two babies with Trisomy 21 has a heart defect,” she would say, before placing the stethoscope to his chest and holding her palm out to indicate that everyone should be quiet. Each time I would hold my breath, waiting for her verdict. Each time, she would pause a few moments before clicking her tongue and saying, “I can’t hear any murmur.”  She seemed almost disappointed.

The nursing staff were no more helpful. They tippy-toed around us, providing inconsistent advice on breastfeeding and general baby care, but barely acknowledging that Okoe was a little different to regular babies. It was as if they, too, felt it was easier and less painful if no one talked about it. The problem was, not one of the many health-care professionals who dealt with us during that week took responsibility for explaining what it meant, in anything other than frightening medical terms, to have a child with Down syndrome. We were given compassionate looks and the occasional elbow squeeze, but no information to speak of and certainly no reassurance that everything would be fine.

Throughout this time, my greatest source of comfort was Okoe himself. Even as a newborn, he had an incredible gift for lifting my spirits and letting me know that life is perfect, just the way it is. His plump, warm, pliable body melted into my chest as I held him, and he gazed at me with loving, smiling eyes.

My husband was perplexed and, of course, extremely worried.  English is not his first language, but he could nevertheless read the mood. Finally, I broke my silence and tried to explain to him their suspicions. There was a long pause, before he asked in a devastating whisper: “Are they going to take Okoe away?”

At that point, another change swept over me, but this time it brought peace. Now I knew with my entire being what it meant to have a child with Down syndrome.  Having Okoe was no different from having any other child. We would love him with all our hearts, just as we love his brothers. We would advocate for him, just like we stick up for his brothers. Just like his brothers, he would grow and develop at his own pace. Just like his brothers, he would excel at some things and need help with others. Just like his brothers, there would be times when he delights us, and times when he infuriates us. Just like his brothers he would live, laugh, love and, most definitely, be loved.

Okoe is 13 months old now. He is not quite crawling, but he can work a room by pivoting across the polished floorboards in ever expanding circles. He is the picture of good health and a genuine people person – greeting everyone he meets with a wide, gummy smile, frantic waving and delighted squeals. He loves to do many things; chatter to the birds in our garden, turn the pages of his favourite books, splash and squirm in a warm bath, and indulge in lazy Sunday morning snuggles. His latest obsession involves making a racket with anything he can get his hands on. I wonder if he’ll play percussion like his dad, be good with his hands like Owusu, have the gift of the gab like Asiedu.

I never used to look forward to Mondays. Now, every Monday, a sweet and thoughtful carer comes to our house to make a fuss over Asanti while I sneak a few precious hours alone with my Okoe. Sometimes, we go to see his physiotherapist for a workout that typically involves more laughter and celebration than hard work. Sometimes we stroll down to our local café and share a muffin while the hip young staff jostle for his attention. Now, Mondays are easily my favourite day of the week.

I’m back at work, and with four children, I don’t have the opportunity to get out as much as I used to.  However, I have been lucky enough to meet some other parents of children with Down syndrome through our local Down syndrome association and I look forward to catching up with them whenever I do get the chance. Just like us, they seem to lead normal lives with their normal families. However, these parents have provided the best source of information, support and encouragement by far. I wish I’d had a chance to meet a parent of a child with Down syndrome during those first few tumultuous days in hospital.

A straight-shooting friend of mine once admitted that when she first heard the news that Okoe has Down syndrome, her first inclination was to offer us condolence. Then, when she got to meet him and hold him, she realised there was nothing about this beautiful baby boy that warranted pity or sadness, and retracted her offer immediately.

While parenting Okoe has most definitely been a joy, I still struggle with some issues. I struggle with being referred to as Okoe’s “carer”; I don’t feel like a carer, I just feel like a mum. Although some might say I was in denial, I especially resented my newborn being categorised as “disabled”.  He was just a baby who cried, pooped and gurgled like any other baby.  Why focus so early in life on what he may or may not be able to do when he grows up?

All I see, when I look at my Okoe, is ability and potential. Just like I see in his brothers.

Fiona Collis-Nyarko and her husband, Yaw, live in Melbourne, Victoria. Fiona works as a research psychologist and, for the past 10 years, has had a particular interest in researching and documenting the experiences and support needs of young people who live with chronic illness or disability. 

 This story appears in Now I See: the Enriching Journey of Raising Children with Down Syndrome, a collection of 50 stories from Australian and New Zealand parents of children with Down syndrome. Go to: www.nowisee.com.au You can also visit their Facebook page here.