The Mother of Adventure

Our living miracle

on February 20, 2014

FootprintsIt’s been almost 10 years since that fateful day…the day my husband, Ian and I learned that our entrance into parenthood was not to be an easy one.

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 sortof 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.

Preparing the baby room for Elissa's arrival.

Preparing the baby room for Elissa’s arrival.

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 Sydrome?”

“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 long for this world. We wondered if she would grow up and get married one day.

Our picture-perfect newborn, dressed to come home from the hospital.

Our picture-perfect newborn, dressed to come home from the hospital.

Then, on July 1, 2004, Elissa came screaming into the world. In the middle of a heatwave, 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 6 lbs., 12 oz. 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 (CHEO), 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.

Post surgeryAt 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, backwards and forwards. 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 several 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 she’s going to wear for the school dance.

Elissa with her dad and her little sister, Lily.

Elissa with her dad and her little sister, Lily.

Elissa has taught us – and so many others – that you’re never too small to overcome hardship and inspire others. In fact, an Ottawa author and close personal friend of mine just authored a beautiful children’s book, Headstrong that was inspired by Elissa’s journey (It can be downloaded 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 her honour.


9 responses to “Our living miracle

  1. Sonia. I still don’t know what to say. I’m so happy your family made it through what to me is unimaginable. You’re all far stronger than I could have been. In the end, though, what a gift. So much to be grateful for.

    • Thanks for your kind words, Geoff! I think we all have our challenges in life…your family has not been immune either, I know that. Elissa truly is a blessing, and I always send positive thoughts and prayers for blessings on your family too, Geoff!

  2. joggingproud says:

    I am so glad to hear things are going well for you and your family. I myself grew up with Hydrocephalus. I was diagnosed at 5 months old, days after I was adopted. It’s a long story, which I fully intend on writing about someday, on this blog, and hopefully a novel eventually. Anyways, 35 years later, here I am, happy, healthy, and shunt free for 14 years now. I hope your daughter continues to grow and get stronger every day. I’d be happy to answer anything I can if you need me. I look forward to reading your progress reports and hope I can tell you my story soon.

    Take care.

    Simon A.

    • Hi Simon! How cool that you came across my blog – thanks so much for taking the time to comment, I truly appreciate it. I would love to hear more about your experience with hydrocephalus – I am particularly intrigued that you are shunt free. Feel free to connect with me via email at: soniam@bell.net. Oh – and congrats on your tri training! I did a “Try a Tri” several years ago and I think it’s très cool! :-)

      • joggingproud says:

        Thanks for the quick reply. I am going to make this short since it is already so late tonight. If u saw on my blog, I have been on the bicycle all afternoon. I wanted to at least get back to you today to explain the part about me not having a shunt anymore. After 20 years of shunts and shunt malfunctions, surgery after surgery,my parents and my neurosurgeon agreed to try a relatively new procedure called an Endoscopic Third Ventriculostomy, or ETV. This surgery would abandon the shunt all together and create a new exit for the CSF to drain through the frontal third ventricle. I am not sure exactly where it goes from there, but I think it must be absorbed by the areas around the brain. I will have to look that up. Anyways, in my case, I had three shunts at the time of this surgery. Two were old and not working. The third one, the one I used most of my life, was on the back right side of my head. I could manually pump it myself if it wasn’t keeping up on its own and I started to get pressure headaches. Well, that is the one they removed when they did the ETV surgery, I’m not exactly sure why they removed it, but it was part of the process, maybe to give them access through the hole that was already there. So technically, I still have probably 2 shunt in my head, or at least pieces of them, but they don’t work. I can n still feel the drain tube that comes down over my left collar bone, but the one on the right that worked is gone. Please look up this surgery. I will warn you that there were very specific guidelines that made me eligible for this, but it is worth checking out. I will write you again soon with more of my back story. For now, I’m off to bed.

        Take care and have a great weekend.

        Simon

  3. This post made me cry. We all love Elissa so much and we are so happy that she is healthy! What a journey!

  4. […] (Hydrocephalus is a condition in which fluid accumulates in the brain.) [You can read a blog post from the mother's perspective.] The book teaches kids that you’re never too young to overcome […]

  5. Melissa says:

    What an amazing story, and beautifully told.

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