On Raising a Tubie Toddler
It was just before 8 AM when the doctor came in. I was exhausted from only a few hours of broken sleep and was expressing milk for my daughter to the whoosh whoosh sound of my Medela Pump In Style breast pump in the Stollery Children’s Hospital in Edmonton, Alberta (Canada). By this point, I had become accustomed to the constant parade of doctors and nurses coming by and I didn’t even care anymore to disconnect myself from the pump before they came in. So, I simply threw a blanket over my shoulders and told her to enter. The doctor popped her head around the curtain and asked how the night was. I told her how my daughter was up screaming most of the night as I tried to comfort her by walking up and down the hallway but that I was excited because this morning one of the speech and language pathologists (SLP) was coming by to help us with a first attempt at nursing. Since our three week old daughter Fia was discharged from the NICU (neonatal intensive care unit) several floors up we hadn’t yet had a chance to give nursing, or even bottle feeding, a try (so much for my elaborate birth plan that said “we would like to do skin to skin as soon as possible following her birth to allow for bonding and natural breastfeeding” or something like that). But that birth plan had long ago gone out the window. I wasn’t even permitted to hold her until she was one week old, let alone try skin to skin and nursing. When I did finally get to hold her, she was attached to so many wires and tubes it took two nurses to transfer her into my lap and the same two nurses to put her back. While in the NICU, for the first few days of her life Fia was given TPN (total parenteral nutrition) a method of delivering fluids with nutrients by IV, and then they inserted a nasogastric tube (NG tube) up her nose and down into her stomach through which she started receiving some formula at first and then my breastmilk which I expressed and gave to the nurses.
But now, this morning, having been out of the NICU for a week and now in one of the pediatric wards, it was all going to change. I was finally going to be able to feed my baby the way nature intended — or so I thought. What I didn’t realize was that, yes, this morning it was all going to change, but in a very different way than I imagined. The doctor who had come in sat down slowly beside me and looked me straight in the eye. We had met before during the “rounds” where the whole team would come by to see each patient separately but we had never spoke one on one before. She asked in a gentle voice if anyone had really told me yet about the severity of my daughter’s brain injury and how it might affect her ability to feed. I swallowed. I had an awful feeling in my stomach and didn’t like where this was going. I didn’t know how much more I could take after what I had just been through. So, I told her what I already knew.
Three weeks prior, during our daughter’s birth at Whitehorse General Hospital in Whitehorse Yukon Territory (Canada) a traumatic event occurred leading her to be delivered via emergency c-section and resulted in a severe brain injury due to a lack of oxygen. The staff at WGH responded as fast as they could to the incident to help save our little Fia. Upon delivery, her Apgar scores were 1,3,3 and she was flat with no respiratory effort, therefore requiring intubation. I was still sedated from the emergency c-section and don’t really remember seeing her until the medivac transfer crew arrived to fly her to Alberta where she underwent a type of therapeutic hypothermia (aka brain cooling) for babies with suspected HIE (hypoxic ischemic encephalopathy). We will never know how much worse her injuries could have been without the brain cooling and we are eternally grateful to live in Canada where we have access to the kind of health care that we do. However, unfortunately, following the brain cooling, Fia’s MRI revealed that she had diffuse damage to her basal ganglia and to the perirolandic areas bilaterally, consistent with a severe HIE stage 3 brain injury. When the NICU team gave us these results at 5 days old in what they called the “touchdown” room, they told us she would very likely have cerebral palsy with moderate to severe motor impairments. They said she may never walk or talk but would hopefully be able to smile and recognize who we are. We would basically just have to wait and see how she developed, of course being following by a care team of professionals (neurologist, pediatrician, physiotherapist, occupational therapist, speech and language pathologist, physiatrist, audiologist, neuroopthamologist, gastroenterologist, ears nose and throat doctor, etc). Feeding and swallowing were not discussed in detail during this meeting other than that it was a necessary piece that had to be resolved before we were sent back home to the Yukon. All I knew is that the nurses were in charge of her feeding so far and that my self-appointed job up until now was to express milk 8–10 times per day to give to the nurses. It was absolutely exhausting but I wanted to feed her my milk because it was the only thing I could control in all of this. I knew Fia was getting my milk by NG tube connected to a feeding pump for now, but I assumed this was just temporary while she learned to nurse or bottle feed. I had even accepted that we might be sent home with this strange nose tube — for a while — until she got comfortable with oral feeds. I had even heard of friends of family who knew someone who knew someone who said their baby also had an NG tube — for a while. So, I thought that wasn’t that weird, right? Other peoples’ babies had had one too so it was okay. But the “for a while” part is what made the difference. “For a while” was not what this doctor had come to tell me. This doctor came to tell me something bigger, something more serious that I didn’t even know existed.
Until this point, as is sadly the case with many Canadians due to our mostly non-inclusive education system and predominantly ableist society, I had lived a pretty sheltered life with very minimal exposure to people living with disabilities so was quite ignorant and unknowledgeable in this regard. I snapped out of my thoughts and tried to pay attention to what the doctor was telling me. “You see”, she said, “that’s great you are going to work with the SLP today to see how Fia tolerates nursing and taking a bottle. The SLP’s have a lot of knowledge about the complexity of swallowing and can teach you about that. However, unfortunately, some children with the same type of brain injury as your daughter are unable to feed orally and require a feeding tube…for life” she said. For life? Did I just hear that correctly? Did she just say for life? Clearly there must be some mistake. How could my daughter have a tube up her nose her whole life? I proceeded to ask many questions to which she explained that there is actually a stomach tube that you can get inserted directly into the stomach which can be hidden under her shirt. This didn’t make me feel any better. So, Fia would now need a hole in her stomach, great. “OK but this tube is just for back up right… like she can still eat solid food and drink water by mouth?” I asked. “No, in the severe cases, not even solids or water can be taken orally” she replied, with a sad look on her face. And this is when my world really started caving in and the reality of how little I knew clued in to me. So, there were people in the world who couldn’t drink water? How could I be 34 years old and not know this simple fact? How can anyone not know this fact about their fellow humans? I felt so ignorant and small and so incredibly selfish for taking this simple physical ability for granted. I had just assumed everyone could drink water that that’s what we’ve been doing for hundreds of thousands of years. Little did I know there is of course a long history of tube feeding going back 3500 years to the ancient Greeks and Egyptians.The doctor explained to me that swallowing is a very complex process and for some kids with severe cerebral palsy, their brain doesn’t talk properly to the muscles required for swallowing, therefore resulting in an unsafe swallow causing aspiration which leads to repeated pneumonias and most likely death. Now I was starting to understand, this doctor was the bearer of bad news and also the safekeeper. It was her medical duty to allow us the chance to work with the SLP and give Fia a chance at oral feeding, but only a very small amount, because sadly she knew the consequences of what could happen and was trying to warn me of what was at stake.
I thanked the doctor for her honesty as no one else had yet had the courage to explain this critical information to the frantically pumping robot mom. She quickly left the room and I finished expressing my milk and put the pump away. What was the point in expressing milk if Fia was just going to be eating from a tube her whole life? Shouldn’t I just give up right now and just except that everything is backwards and I should stop trying to make any of it normal, including feeding her breastmilk? I took a breath and realized I was starving. The SLP was coming in 20 minutes and I had better grab a bite to eat while my daughter was still sleeping and while I had time. I let the nurse know I was heading down to the cafeteria and then I grabbed an elevator downstairs and cried. I cried and I cried and I cried. I cried as fast as I could because I didn’t even have time to cry. Still in tears, I called my husband who was on his way over from Ronald McDonald House where we took turns staying for the night to get a solid sleep. He didn’t even have time to speak before I started ordering scrambled eggs in the cafeteria, also in tears. Mostly I just thought of how I was going to tell my family. How was I going to explain this other huge chunk of hard news to my family in Ontario who were already processing everything else I just told them, while they were presently taking care of my sister Jennifer who was on her deathbed after a long battle with cancer. Later that day, I had a chance to speak to my sister and niece on the phone. I told them about the doctor and the tube for life and they listened and they gave me all their love and support. My sister had very little energy left at this point but even in the state she was in she found the right words I needed to hear and she more or less told me it would be okay, that living with a tube is okay because it’s still living and with living there is still love. Ah the wisdom and comfort of those who don’t have much time left. My sister passed away a week after that and we said our goodbyes over Skype but she has given me her strength everyday since then on this strange and beautiful journey of motherhood.
Fast-forward 17 months and Fia’s g-tube is the least of my worries. We still don’t know if she will ever be able to orally feed but when you have a child with medical complexities you learn not to worry so much about the future because you have enough to deal with in the present. Her present diagnosis includes HIE stage 3, quadriparetic cerebral palsy (most likely dyskinetic or mixed), global developmental delay, hypotonia, dystonia, symptomatic epilepsy, cortical visual impairment, mild hearing loss, and dysphagia with NPO (not permitted oral). Her care team of professionals includes a neurologist, pediatrician, physiotherapist, occupational therapist, speech and language pathologist, physiatrist, audiologist, neuroopthamologist, gastroenterologist, ears nose and throat doctor, and probably some others that I am forgetting. She is presently non-mobile and presently unable to hold her head up or roll over or sit up, so is in many ways still like a newborn, but she has developed quite the personality with her light up the room smile and laugh. She fills our lives with so much joy and we are so lucky for this time we have with her as we know some parents never get to take their babies home from the NICU and experience day to day life with their children.
Fia is exclusively tube fed, having had an NG tube for 6 months and then a gastronomy tube (G tube) in her stomach since then. She had a swallowing study done last winter which showed that she often silently aspirates without any coughing, putting her at dangerous risk for repeated aspiration and pneumonia. So that’s why I’m okay now with the hole in her stomach…even if it’s for life. It’s honestly the least of my worries. Sure, it’s weird and it hurts my hands to push syringes every day (she gets 4 daily bolus feeds all via syringe), but it keeps her safe. It keeps her here with us and as the sign in our washroom says: When life gives you lemons, make lemonade. And so that’s what we do in this house. We make lemonade. We look at Fia’s gastronomy tube (G tube) as a chance to feed her all sorts of foods that an orally eating toddler probably wouldn’t eat — like kale and broccoli and prunes and flax oil and kidney beans and nutritional yeast. Yup, we are basically foodies with a tubie😊
There are still a lot of kinks to work out, for example Fia has problems with reflux and has vomited pretty much daily her whole life whether receiving breastmilk, homemade blends (with or without dairy and other allergens), or whether on specialized elemental formulas. The cause is unknown at this point other than that GI issues like GERD are extremely common for kids with cerebral palsy with tone issues and it’s just another thing we have to live with for the moment. A trial of reflux meds (omeprazole) didn’t help but we will be seeing the doctors down south for this soon. But for now she is still growing okay for now and we hope to continue making homemade nutritious blends for her for as long as possible. And if we can’t do that and she requires special formula for the rest of her life than that’s okay too because, as my sister probably would have said, receiving your nutrition via formula is still living and with living there is still love.
Thanks for taking the time to read about our life with a tubie toddler. For context, according to the Cerebral Palsy Canada Network there are over 80,000 Canadians living with CP and it is the most common physical disability in children. Among children with cerebral palsy, approximately 11% require a feeding tube and that number rises to 32% for children with severe motor impairment. For more information about tube feeding you can visit The Feeding Tube Awareness Foundation. For more information about HIE, you can visit Hope for HIE a worldwide organization for families of children with HIE and for more information about cerebral palsy you can visit Cerebral Palsy Association of BC or just google “cerebral palsy” to learn more.
