#MumStory is a series by The Singapore Women’s Weekly to uncover the underrated and underreported moments in motherhood and parenting — because we believe every mum has a story worth telling. Got a story to share? Email us at sww@sph.com.sg or slide into our DMs on Instagram.
One of the hardest things a parent can encounter is when their child is born with a disability. For Australian Nicola Gennaoui, who has lived in Singapore for the last 12 years, it started when her son Raphael suffered a fetal-maternal haemorrhage, leading to severe brain damage. On day 10 of her son’s life, Nicola learnt that he had severe cerebral palsy — the doctor said he would likely not make it past his first birthday. However, Raphael defied all odds. Now, the six-year-old boy attends therapy with a smile on his face.
Caring for a child with disabilities is not easy. Nicola, who has three other children, has had to employ a full-time helper, and stays by her son’s side during the night while he has seizures. She and her husband also struggled financially with their son’s therapies, and with getting the necessary equipment for him.
Read on for her #MumStory.
To put it simply, a fetal-maternal haemorrhage is when the blood from the baby in the womb reverses back into the mother. In some cases, the baby will be born and will need a blood transfusion immediately after birth. Substantial blood loss can lead to brain damage due to a lack of oxygen to the brain.
In a lot of cases, the baby is born still. My son Raphael was born ghost-white and still, but was revived at birth and received three blood transfusions. He had lost nearly all the blood in his body, which resulted in severe brain damage.
How did you find out your son has cerebral palsy?
We found out on day 10 of Raphy’s life that he had severe cerebral palsy. We were told that he would more than likely not have sight or hearing, would not walk or talk or even swallow on his own, and that he would have seizures. As you can imagine, this is a parent’s worst nightmare for their child.
We were also told he would have to go home on a breathing machine and would only be able to lie down until multiple chest infections eventually killed him. The amount of pain and suffering is unimaginable. Life, to me, is about enjoying the simple things: a sunrise or sunset; swimming in the ocean; hearing a bird’s song; laughing; tasting delicious food. None of this would be possible. Just to lay in a cot, in darkness and silence, constantly sick with painful stiff muscles, having seizures, waiting to die — to me, that’s not a life; you are merely existing.
After four weeks in the NICU, Raphy came home. It was very overwhelming. I had lost my hopes and dreams for my baby boy, and I was angry.
I was so hurt and angry this had happened to us, to him, and to his sister. I was incredibly sad and exhausted.
Raphy would cry all day and all night. My husband was an exceptional help but he also had a job to get back to. We would both get about an hour’s sleep a night. Raphy was able to swallow but his reflux was so bad that he vomited all the milk he was able to drink, which took him over an hour to do so.
In the end, he stopped drinking and had to have surgery to implant a “peg” into his stomach, which is where all his fluids and medicines go. He can eat orally, though.
My poor three-year-old daughter didn’t understand what was happening but she knew everyone was very sad. She would get out of her bed in the middle of the night and sit in a corner of the house on her own, in the dark — I would have to go and find her. It was all too much for me, especially when my husband went back to work and started travelling. I was beyond exhausted. Honestly, I was depleted. My physical and mental health were suffering, and I needed help. A lot of it.
Do you have assistance with caregiving?
Amazingly our helper at the time was doing a carer’s course and was so patient with Raphy. We asked if she wanted to be his carer full time while we got another helper for the house chores. Gene has now been Raphy’s carer for nearly seven years and they both adore each other. She is his angel, though sometimes I wonder if he is hers.
His needs are very complex so he needs someone with him at all times. My husband and I look after him at night. He is awake a lot of the night, either feeling uncomfortable or having seizures.
He also goes to a wonderful little school three times a week, three hours a day, where they incorporate education, help him socialise, and conduct therapies for him. Raphael needs speech therapy, occupational therapy and physiotherapy on a daily basis, so this is a perfect space for him.
Raphael has taught me more in his short six years than I had learnt in my 33 years before I gave birth to him. Before that, I took so much for granted and cared about material things; I focused on what I didn’t have rather than what I did.
Kindness has been the biggest revelation for me. Kindness doesn’t cost you anything and can instantly change someone’s day or even life.
Health is also something important that I took for granted. To have health is to have freedom. A working brain is everything. If your brain can tell your legs to walk, can tell your mouth to talk, to think for yourself, to feed yourself… that’s everything.
The mind is such an incredibly powerful tool. It makes you, you. It defines you. That’s who you are. Not the way you look, the car you drive, or the house you live in.
What I would give to know who my Raphael was going to be. To have a conversation with him, listen to his views and opinions. To listen to his conversations with his sisters would mean the world to me.
We really try not to let Raphael’s disability define our family. We try so hard to include him in everything we do, which I think rubs off on those around us as they always include Raphy in everything. If his three sisters are doing it, we will try to make sure he can join in.
It was obviously much easier when he was little, but as he grows, it’s not that easy. I would say that (without consciously doing it) we do shy away from really busy or small spaces because getting the wheelchair around is tricky.
We are amazingly blessed with the love and support from all of our friends and family. Even people we don’t know show us such kindness.
When Raphael was two, we started to really struggle financially. Keeping up with all of his therapies, equipment, care, medicines, appointments etc. was a huge financial burden. My husband’s sister started crowdfunding on GoFundMe, which saw people from far and wide dig deep into their pockets. We were completely blown away by the generosity of our friends and family, and those we had never met.
From that, a group of our amazing friends started an annual charity event called “Round for Raphy” (which took a huge amount of time and commitment). Round for Raphy is a golf day held in Australia. It has been such an incredible event held for four years, and every year it brings me to tears. There is so much love and kindness in the world.
Sometimes when the days are hard and dark, I think about those who have supported our family and I see the light again.
Not once has anyone ever made Raphy’s condition an issue. They have always opened their arms and not only welcomed us, but supported us and been there for us when we needed them.
We are so very lucky to be surrounded by the most amazing people. I guess the biggest challenge is travelling. My husband and I are — or were — big travellers. Now, we really have to think about our destinations. Snow is hard, cobbled stones are hard, sand is hard, and hills are hard. So we are quite limited. But we do make it work where we can.
Also, the fact that we are travelling in a group of seven is challenging in itself. Finding hotel rooms that are big enough for us all and don’t cost an absolute fortune is the biggest issue.
Yes I have. Even though his full-time carer is there and does such a great job with him, it can get really tricky to make sure all of the kids get their time with me.
The hardest is when Raphy has a medical appointment or hospital stay, as I would be away from the girls a lot.
But I do dinner time and bedtime for the girls every night. We read stories and talk about our day. I make sure I always have time for cuddles, especially if they ask for one. And I always make sure I tell them I love them every chance I get.
How are your daughters’ relationship with Raphael? Do they understand their brother’s condition?
They are all such beautiful human beings because of Raphy. They are kind, compassionate, thoughtful, and extremely helpful. They love him, care for him, read to him, include him in their games, and dress him up. His littlest sister sits with him and helps to massage or stretch him. They understand that Raphy can’t walk or talk.
My eldest daughter in particular is understanding more and more about his condition. While it does make her sad, it is also helping shape her character to be an understanding and non-judgmental person.
With Raphael being non-verbal, how do you and the family communicate with him?
We always talk to him. Sometimes we give options in our hands and ask him to hit one of our hands to make his choice. Because he has no control over his limbs, it’s difficult to know if he did it with purpose or if he did it because that’s just what he does. Raphy’s main form of communication is crying if he’s in pain or discomfort. It’s then a guessing game of what’s causing the pain.
Please share with us more about who Raphael is as a person!
Raphael is a gentle, patient, and determined little guy. He is the bravest kid I’ve ever met. The amount of pain he has had to endure is extremely sad. He always does his therapy with a smile on his face (now, not in the early days), and is devilishly handsome.
What advice would you give to parents looking after children with disabilities?
Get help and get help fast. Look after yourself and put yourself first every now and then. Don’t put yourself and your marriage last. The day Raphael was born, my husband made an appointment with a therapist for us both to see on a weekly basis. It was the best thing we did.
My mental health was fading fast then. It was spiraling at an alarming rate but therapy, though extremely tough at times, was what got us through the darkest time of our lives. It has also made us stronger than ever. We have never missed a single appointment and continue to become stronger and stronger.
We are a team and I couldn’t do any of it without the love and support of my husband. Communication is so important. My children and I are lucky to have him. My husband pushes me to do things for myself on a regular basis, even if it’s just a walk or swim, a girl’s night out, a massage — anything, just as long as it’s for me!
Coming from a big family, I’d always wanted kids. Being the youngest of four was really fun. I was always looked after, always felt loved, and was included most of the time. My siblings never really fought. We always did things together as a family unit. Most of my childhood memories are nothing but fun and laughter, singing and dancing. I wanted to have a family of my own to pass on the same warmth, fun and love that my family had.
How does a day in your life look like?
Busy. Up early with my littlest and then it’s a busy morning of breakfast, getting dressed for school, and out of the door. I do three different drop-offs per morning and three separate pick-ups. I wear about 18 different hats per day, whether it be a taxi driver, a nurse, a chef, a therapist, a counsellor, a teacher, a friend, a handywoman, etc.
What makes your motherhood journey worth it?
Watching my kids grow. They bring such joy to my life every day. The knowledge they impart to me from their little worlds makes me so happy. They have such different personalities but are so wonderful in their own ways.
What’s a recent motherhood moment that made you smile?
My daughter just won a “Citizenship Award” in her school. This is to award students who consistently bring positivity inside and outside of the classroom. This to me is such an amazing award to receive. I would far prefer my children to get this award over an academic award; this award means that my daughter is a beautiful human being.
What kind of mum do you aspire to be?
A non-judgmental mum. I want my children to know they can talk to me about anything, and trust and confide in me, even if it’s something they aren’t proud of. I want them to know I will always be on their side and love them no matter what.