The healthcare system, motherhood, community and an Indigenous perspective

Author Teneya Gwin and her son on a much better path following years of challenging experiences navigating the healthcare system

When Anne gave me the opportunity to share my thoughts on a blog post I wasn’t sure how to share my perspective and thoughts without getting too personal. So, I decided, I am just going to share it all, maybe it will help someone – maybe it will bring a different perspective– maybe it will bring reassurance to someone going through a similar situation? If it can help anyone in any way, I am going to share.

Growing up an Indigenous youth I never put much thought into the healthcare system; I never had any major medical issues and never really had to rely on health care professionals. Now that I am a mother of 2 children I am starting to see the cracks in the system and the stereotypes and profiling that still exists.

It isn’t a secret that the Canadian medical system has caused harm to Indigenous people by segregating Indigenous people to Indian hospitals in the past, and currently racism is still felt by Indigenous patients across Canada. Indian hospitals would sterilize women patients without their consent or knowledge, child patients would go through experimental operations and testing, child patients would be taken away from their families and not allowed visitation for years, record keeping was destroyed and the level of care was much lower than the Canadian citizens in community hospitals.

Knowing this information makes you a bit guarded about weather you want to share your identity with new doctors or nurses. I started to see stereotyping and profiling during my first pregnancy. I have an autoimmune condition on my skin; it was left untreated for almost 20 years because the doctors said I had a bit more melanin in my skin then the “average Canadian” and my dark spots were nothing to worry about. While I was pregnant, instead of treating my autoimmune disease they constantly questioned me if I was being abused or falling because they appear to be bruises. I believe there must have been something on my file that indicated I was covered in bruises because I was questioned at every appointment.

My daughter was born and I quickly realized you cannot talk about traditional parenting such as co-sleeping and breastfeeding your child past 6 months of age. When these topics were raised, I was shamed and lectured. I was also told dairy and formula were better for my baby then what I have to offer as her mother. But like a lot Indigenous babies, my daughter was allergic to dairy. So, I didn’t tell the whole truth when meeting with community nurses. I knew they would disapprove of how I was raising my daughter. What I quickly observed and felt was if things were not done in western ways, it was considered the wrong way.

The cracks in the system were there… but I still had faith that these professionals would care for me and my baby.

Fast forward 3 more years, when I became pregnant with my son. The level of care I received was significantly different from my first pregnancy, and not for the better. During my last ultrasound, his breathing test failed and they said his lungs would mature enough before delivery. My son was born and while in the hospital I was very concerned with his breathing and choking. I was reassured nothing was wrong and newborns sometimes act this way, but I had this gut feeling that something wasn’t right.

Two weeks pass and my son took his first ambulance ride to the Stollery Children’s Hospital. His lips were blue, his body limp in my arms and he had stopped breathing. It was my worst nightmare.

They monitored him for a few days in the NICU and said his choking was due to my milk supply and his breathing was due to the common cold. I still did not feel safe with these answers.

Months pass and we were still experiencing problems with his breathing and choking. My family doctor suggests the next time he is choking that he will eventually lose consciousness and will eventually start breathing again. He also suggested my postpartum was contributing to this issue, which made me feel like maybe I was the problem. Again, they told me I didn’t need to breastfeed, bottle fed would be better and to start sleep training my son in his own bed.  

I could not take this lack of care any longer and I took matters into my own hands. I don’t know if it is the way that I approached things; I was never mad, I never raised my voice but emotion was always in my voice as I felt helpless finding solutions for my son to breathe with ease. I was never taken seriously and always disregarded because the baby they saw in front of them was a happy chubby baby boy. I searched for 2 years to find answers for my son and felt completely unsafe with every new medical professional. Telling our story over and over, with each time I could feel my body taking flight and not being able to be emotionally stable. We saw 2 different family doctors, a physiotherapist, airway dentistry, an occupational therapist, a feeding specialist, pediatricians, an ear nose and throat specialist, a speech therapist, a respiratory doctor, a myofunctional therapist, an endocrinologist, dermatologists, chiropractors, a neurologist, had x-rays, 3 visits to emergency and multiple bloodwork tests.

As you can imagine these multiple appointments were exhausting for my son and I felt terrible that he had to go through this. I was exhausted; I was scared to sleep because I was terrified he would stop breathing. I did not have a support system. Instead I was constantly told to take medication to help with the anxiety I was experiencing. The problem with taking medication is that I may sleep too heavy that I wouldn’t wake up if he stopped breathing or was choking. Still, I knew that medication maybe a quick fix, but it wasn’t going to give me a support system that I desperately needed.

Finally, I found a doctor that believed in my gut feeling that something was wrong and sent us to the sleep lab at the Stollery. After the first sleep study they noticed his oxygen would drop 20 times per hour. By this time other medical professionals had prescribed medication that he possibly didn’t need and it was causing other problems. My son had central sleep apnea possibly caused by Chiari malformation and asthma. Central sleep apnea is when you brain does not send a signal to your body to breathe.

That motherly instinct that I had inside of me was right – I’m so happy I didn’t give up. I researched Indigenous traditional parenting, I spoke with Indigenous midwives, and I chatted with community members on how we used to raise our babies. Historically there weren’t cases of sudden infant death syndrome (SIDS) because we slept with our babies and the rhythm of the mothers breathing would sync with the baby. Historically we didn’t have postpartum anxiety and depression because the community raised the child along with the mother.

We have detached from our natural and cultural ways of raising healthy children and it is having significant impact on our mothers and babies. Our system is broken. We prescribe rather than support, we don’t listen to the mothers and their intuition. We desperately need change.

My son’s health has improved tremendously and I am happy to share that he is no longer on any medication. Since stopping his medications, he has grown an inch (in 2 months) and his vocabulary has exploded! His central apnea and choking have decreased to almost no episodes. I have also learned that central apnea is often the cause of SIDs and for some babies it takes some time for their brains to sync with their bodies. Some people may disagree with me, but I truly believe those traditional ways of parenting and listening to my intuition kept my baby with me.

In Anne’s cultural agility coaching program I have created an exercise to read about recent examples of how Indigenous People have been treated in the healthcare system across Canada to demonstrate that the system has been build on the oppression of Indigenous people and their ways of knowing and doing are less then. If you want to learn more about how to use your influence to help change systems like the one I’ve experienced, I’d encourage you to check the program out.

And mama, always listen to your gut.