‘Our little miracle baby’

By Sonia Mendes

elissa_mendesA newly published book recounts the inspiring story of young Elissa Mendes, who was born with a large cyst in her brain, and underwent two brain surgeries in her first year of life. Nearly a decade later, Elissa is a thriving, smart and courageous nine-year-old, for which her parents are ever thankful.

It’s not every day that a children’s book makes me cry, but Headstrong gets me every time.

Ironically, it’s the story of a spunky little girl — Ellie — and how she overcomes a large cyst in her brain (hydrocephalus) and two brain surgeries in her first year of life to grow into a bright, fun-loving, “normal” kid.
The book, which is beautifully written by Ottawa author Stefania Moffatt, is meant to bring inspiration, not tears.

But perhaps you’ll forgive my sentimentality if you know the true reason behind it. You see, Headstrong isn’t fiction; it’s the true story of my own nine-year-old daughter, Elissa, and the difficult entrance my husband Ian and I had into parenthood.

Ten years ago, I was in the third trimester of what had been a relatively easy first pregnancy. We were at the clinic for what was meant to be a routine ultrasound.

It was sort of a bonus, actually – the only reason we were even there is that my 20-week ultrasound had indicated a low-lying placenta, which could indicate the need for a C-section. That’s what we were there to determine that day.

I remember hoping against hope that my placenta had moved; I was anxious about the prospect of a C-section and hoped to deliver naturally.

Little did I know that would be the very least of my concerns by the time we left the clinic that day.

The ultrasound started normally enough. Our female technician chatted to us about the baby and the images she was seeing. But partway through, she stopped talking. Then she made some sort of excuse and left the room, closing the door behind her.

After what seemed an eternity, she finally returned with a doctor we had never met before. I immediately sensed that the tone had completely changed in the room. The doctor’s body language was very closed, very clinical; he didn’t look either of us in the eye when he entered.

He said nothing; he only picked up the wand and silently started performing another ultrasound on my belly. I was starting to feel very anxious when Ian asked what was going on. Finally, the doctor spoke.

“Do either of you have a family history of Down Syndrome?”

“No,” Ian answered quickly. “Can you please tell us what’s happening?”

“We’re not seeing what we should when we look at your baby’s head,” the doctor answered. By now, we knew that he was a neo-natal high-risk specialist. “There’s a huge black spot where your baby’s brain should be. It could indicate Down Syndrome, a cyst or a tumour. Or it might mean that about half of your baby’s brain is missing.”

I felt a wave of horror and anxiety well up inside me; I felt like I was drowning. I dissolved into uncontrollable sobs, tears streaming down my face. Ian continued discussing the situation with the doctor. I will never forget him asking, “But…there’s a chance that everything could be OK, right?”

The doctor very tentatively acknowledged that things could be OK. But everything – the situation, the uncertainly, the possibilities – seemed dire. We were immediately assigned to the high-risk pregnancy clinic, and told that our baby would need serial ultrasounds – every two weeks – to monitor the situation.

The next few months were a blur of appointments, research, tears and anxiety. Aside from our immediate families, we told virtually nobody what we were going through. We didn’t even know what was happening ourselves – the last thing we wanted to do was field questions and sympathetic looks for the next three months.

We decided to find out the sex of our baby – something we hadn’t planned to do. We learned it was a girl, and we quietly named her Elissa Ashley Mendes. We wondered what she would be like, and if she would be in this world for long. We wondered if she would grow up and get married one day.

Then, on July 1, 2004, Elissa came screaming into the world. In the middle of a heat wave, she made her presence known amidst the spectacular Canada Day fireworks show on Parliament Hill in Ottawa. A massive thunderstorm roared through the city shortly after her birth; heaven was very reluctant to lose this beautiful angel.

She was perfect; she was full term and weighed six pounds, 12 ounces. You would never know by looking at her that there was so much going on inside her little head.

A few days later, we finally knew the full story. That dark spot on the ultrasound was a fluid-filled cyst – hydrocephalus. Nobody could tell us why it had formed, though hydrocephalus can be caused when there is a lack of folic acid. I had been taking my supplements religiously since getting pregnant.

We started what would become a lifetime relationship with the Children’s Hospital of Eastern Ontario, where we were advised by our pediatric neurosurgeon that the cyst in Elissa’s head was causing pressure on her brain. It was like an accordion, the doctor said, and it was being squeezed together.

He suggested brain surgery – and a shunt installation. We learned that a shunt is a tiny tube that would be inserted into the cyst, and would drain the excess fluid down and expel it into her abdominal cavity.

It seemed a near-impossible feat on a baby who – as Ian remembers – was about the size and weight of a regulation football. But after learning that opting out of the surgery could leave to brain-damaging seizures, we nervously opted for the surgery.

At just nine days old, Elissa was admitted to CHEO for her first brain surgery. It was deemed a huge success, though a clog in the shunt necessitated a second brain surgery when Elissa was eight months old.

The first couple of years with Elissa brought many uncertainties. We didn’t yet know how the surgeries would affect her development. She wasn’t hitting the expected physical milestones, and we took her for occupational therapy sessions at CHEO.

While first-time parents are often anxious, our anxiety was heightened. We had to learn to ditch the parenting books – which tell you what should be happening and when – and chart our own course. “Where’s the chapter that tells you what to expect after your infant has had massive brain surgery?” Ian asked me.

There was no road map, but our families’ support and the incredible team at CHEO were amazing.

Elissa didn’t walk till she was two years old, but when she was 18 months she could identify all the letters of the alphabet — and she knew how to read before she even started school. She’s a cautious kid – she plays by the rules – but she has the heart and the courage of a lion.

Today, our little miracle baby is a thriving nine-year-old. She still wows us with her language and reading skills – she has read all seven books of the Harry Potter series many times over – not to mention her sense of humour and her lust for life.

While she goes for an MRI every two years to ensure everything is on track, Elissa’s biggest worry these days is what colour and theme to use when she redecorates her bedroom.

Elissa has taught us – and so many others – that you’re never too small to overcome hardship and inspire others. I was deeply touched when Stefania Moffatt — a close personal friend of mine — decided to capture Elissa’s inspiring journey in her self-published book, Headstrong (copies can be ordered directly from the author’s site at www.stefaniamoffatt.com).

We have been blessed beyond belief to have Elissa in our lives, and you can bet that come July 1, 2014, there will be a pretty awesome party in honour of her amazing young life.

Photos: Courtesy of Sonia Mendes