When You Know Something Isn't Right: Learning to Trust Your Mother's Intuition

Have you ever felt like something was wrong, but everyone said your child is fine?

Have you ever felt it in your gut? That quiet, persistent whisper telling you that something isn’t right, even while the world—and the experts—tell you that everything is fine?

For many of us as parents, that instinct isn’t just a feeling; it’s an alarm bell. When my third child, Olivia, was born, I knew. I knew from day one that something was different. 

Being a mother of two already, it wasn’t my first rodeo. I knew what to expect. But Olivia wasn't following the script. She didn't pass meconium until day three. She struggled with jaundice, and even after being sent home, we were sent back to the hospital because her bilirubin levels spiked again.

It felt like a series of "normal" hurdles, but the struggle didn't stop there. She wouldn’t latch. She cried and threw up after almost every feed. She couldn’t transition to a crib, and needed to be swaddled but hated sensory stimulation. She cried in the bath, in the car—there were no "parenting hacks" in my toolbox that could calm her.

By the time she was four months old, she wasn’t gaining weight. My life became a revolving door of weekly weigh-ins at the Paediatrician’s office. She was put on reflux medication, but she fought the syringe, coughing it back up. She refused soothers and wouldn’t take a bottle. I was a shell of a person—sleep-deprived, terrified, and drowning in guilt, trying to balance her needs with the needs of my other two small children.

The breaking point was a three-hour window where I left Olivia with her dad. I pumped breastmilk for him to give her in the bottle. She cried the entire time. The milk just pooled in her mouth; she couldn't seem to wrap her tongue around the bottle. We tried every bottle on the market—even the ones stated as "colic-proof." Nothing worked.

We were referred to an Occupational Therapist, who looked at me and said she had never seen a baby like this before. That became the theme of Olivia’s life: she was constantly the pioneer, the first patient to present with issues no one had seen before.

I remember crying on the phone with the OT, desperate, knowing Olivia had lost weight again. She told me to get to the hospital that day. At Brantford General Hospital, they placed an NG tube to keep her stable. The nurses told me to leave the room because she "could smell me," and to pump so Corey could feed her. It took two days for them to understand that this wasn't a "mommy-attachment" issue; it was a physical reality we had been living for five months.

When we were transferred to McMaster Children’s Hospital, the disbelief continued. They didn't think her reflux was "that bad" until they increased the speed on her feed pump. She proved them wrong, projectile vomiting all over the room, the interns, and the bed. She was tiny, but she had the strength of a dragon when it came to her reflux.

And then came the moment that still makes my blood boil. The medical team suggested this was a "learned behavior." They actually hypothesized that a six-month-old was choosing not to drink from a bottle just to be difficult. As someone with training in Child Development and Psychology, I knew this was absurd. A baby doesn't resist the necessity of life to get their way. I refused to let that narrative continue.

She was given a "Failure to Thrive" diagnosis—a clinical label that offered no answers, only a confirmation of what I already knew: she couldn't survive without the NG tube. This is when we decided that the NG tube wasn't going to be temporary and she needed a more sustainable way to get nutrition. In August 2012 Olivia had surgery to have a G-tube placed in her stomach that directly connected to the feed pump. This was her first major surgery, but we knew that it would allow her to have more independence and we would be able to go home once she was stabilized. The NG tube was too fragile for her to leave the hospital as she would consistently pull it out and it would need to be re-inserted by a Nurse for the next feed.

The turning point finally came in October. The genetics team was finally referred, and we received the diagnosis of 1 Q 21.1  micro-deletion. 

The relief was instant. I didn't care about the name of the diagnosis; I just needed an answer. I needed to know that I wasn’t crazy, that I wasn’t "overreacting," and that I wasn't just an overprotective mother. My Mother's Intuition was real, and it guided me to ensure that the team knew that I was the expert to my baby and my voice deserved to be heard. I had to keep believing in myself, even when I felt like I was losing my mind. I knew my baby in a way nobody else did. I knew she was in pain, and I knew she wasn’t a "bad baby." I didn't stop until we had an answer.

Getting an answer was just the beginning of our story. Now we knew why she wasn't thriving, but the hard work and sleepless nights continued as having a diagnosis is just one piece of the puzzle. We continued to work with OT, Physiotherapists, Speech Therapists, Behaviour Therapists, Dieticians, Psychotherapists, along with a whole team of specialists through McMaster Children's Hospital. 

If you are out there right now, fighting to be heard, trust your gut. You are the expert on your child. Keep pushing, keep searching, and keep advocating. You aren't imagining the struggle. You are not invisible and neither is your child. Sometimes it feels like you are on an uphill battle and nobody believes in you. It took me a long time to give myself the acknowledgment and credit for trusting my gut—for knowing, against all the noise and medical dismissal, that my child wasn't just 'fine,' but that she was fighting a battle no one else could see.

Come along for the journey—listen, watch, and grow with me wherever you get your podcasts. Like & subscribe to join the IV League—where you’re not just a listener, you’re part of the story we’re building together.

Read more about why I started the Invisibly Visible Podcast

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