Eytan

Becoming a parent is stressful. Imagine adding in significant health problems.

Raising our son Eytan has been filled with highs and lows, ups and downs, tears and smiles, heartache, and joy. I have cried sad tears and happy tears.

Eytan was born towards the end of the COVID-19 lockdowns in summer 2021.My husband and I delayed having a second child when the pandemic hit, as we didn’t want to welcome a baby who couldn’t meet our family and friends. So yes, we were very eager and overly excited about Eytan’s arrival.

Quite early on, we noticed that Eytan was making an unusual noise while breastfeeding It sounded as if he was sick and congested, even though he was not. The doctors told us he had laryngomalacia, a word I had never heard of. They explained that he had floppy vocal cords, which leads to noisy babies and has the potential to obstruct his breathing. We were relieved to find out that most often this condition resolves itself without surgery.

Soon after, we saw that Eytan was struggling with tummy time. At around three months of age, babies begin to lift their heads a bit and turn it side to side when on their bellies. Eytan had a very large head for a baby his age, and he was having trouble lifting it. This led us to seeking out a physiotherapist, to help him work on the muscle strength he needed in his neck, chest and arm. This is when we learned another new word, hypotonia, which means decreased muscle tone. She encouraged us to speak to our pediatrician.

In the weeks and months that followed, there were lots and lots of medical appointments in many different departments to help us understand Eytan’s condition. In between, the children’s hospital provided physiotherapy and occupational therapy to help Eytan achieve his developmental milestones.

As a mom, I felt scared. Afraid. Worried. Overwhelmed. The uncertainty for Eytan’s health and his future was a constant presence in our lives.

Searching for answers, we discovered that Eytan had large ventricles in his heart, and there were concerns about his brain and spine. We were also told about USP9X, a genetic mutation that leads to neurodevelopmental disorders. These conditions present challenges in pulling himself up, walking, and crawling, along with swallowing and breathing difficulties.

In January 2023, Eytan’s case was picked up by MAB-Mackay for his rehab therapy. Stepping into the centre for the first time was frightening, as we were acknowledging that Eytan had challenges. But the second we met our multidisciplinary team (OT, PT, speech and social worker) I felt a sense of relief and comfort that we were exactly where we needed to bee. I shared with them my hopes for Eytan, and they helped guide my expectations. My worries began to slowly dissipate.

The transition to their care was incredible! We were relieved and encouraged that their focus was on Eytan’s therapies and early intervention rather than on his diagnosis. The MAB-Mackay became a place I could share both my joy and my fears. I felt heard and understood. Most importantly, we were well taken care of. It became a hub for sharing our feelings, our concerns, and getting the information and tools that we needed.

Our journey started with a concrete plan of numerous interventions, both at home and at daycare, and a clear understanding of what would be done to nurture Eytan’s progress. He loved working with his incredible physiotherapist, Christina, and occupational therapist, Evie. They pooled a lot of resources together, got to know Eytan’s likes (and dislikes) and tailored his program to him.

I’m delighted to share that Eytan is soaring! He shines brighter and brighter each day. We’re so impressed with our little man. Through his therapies, he went from barely cruising on furniture, to using the walker that they provided us, and now to full-on walking unassisted. His eating and drinking are also much better too. He’s a talkative, energetic and warm-hearted two-year-old who we love unconditionally.

Our story doesn’t end here.

While Eytan’s motor skills are improving and he’s caught up in many key areas of development, he’ll continue to rely on MAB-Mackay. The Centre has become a second home and they champion different issues we encounter. At the moment, we’re working on his saliva management, toilet training and learning to climb the stairs.

I’ve come to accept the uncertainty. I’m prepared for the worst, but we always hope for the best. As a parent, all I can do is try my best to be there for my son, to ask for help when needed, and to rely on the supportive team at the MAB-Mackay. The feelings of comfort that we’re surrounded by the steadiness and stability provided by our team gives our family both confidence and peace of mind. I could not have done it without the MAB-Mackay team!

With heartfelt gratitude,

Samara
Eytan’s Mom (alongside his dad, Joe, and big sister Liev)

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