By: Candice Brown
PRE:
My son and my experiences with Huey the Hole are definitely not common but neither are our DYRK1A kids or their diagnosis. I hope this soothes at least one mama’s heart when she’s feeling her struggles are weird, awkward and wrong. You are never alone.
Previous articles by Candice:
http://www.dyrk1a.org/main-blog/2021/11/22/an-open-letter-to-my-dyrk1a-sons-doctors
Huey the Hole’s Rein of Terror
Never Grow Up
My feet rustled on the plastic painting drape and I admired the creation my family had made: our future baby’s nursery. My hips ached, my arms were sore and beads of sweat were cooling on my neck. At 28 weeks, Baby Mack was kicking up a storm, Karate sparring with my organs. Our middle ultrasound had gone off without a hitch, leaving my husband and I basking in good news and confirming our baby’s name, Macklam. Everyone assumed the cake and nursery would be blue to represent the singular colour of ‘boy’ but my gut told me it should be green. My brain was loaded with ideas of imagination, adventure and fairy tales, imagining that, one day, he would walk in as a toddler roaming for toys and tantrums. I lifted the paint cans and admired the colour, one I only referred to as Neverland green. I found a large Peter Pan decal that said ‘Never Grow Up’ and smiled. Don’t we all wish we could stay young forever? Doesn’t every mom wish her little one would slow down and stay a baby?
A few weeks later, the room would be darker as I sat in the new rocking chair, my phone on speaker and my heart at the back of my throat. The paint smell was just starting to disappear, replaced by laundry detergent from the clean baby sheets. My midwife’s voice was shaky over the phone that night, calling past her usual hour and speaking slowly, allowing me time to take notes. The growth scan came back with results that were concerning; Mack had shockingly small long bones, an enlarged kidney and I had an excess of amniotic fluid. Listening to my midwife, I read and re-read his decal, not knowing that this moment would replay throughout our stay in the NICU and through our son’s diagnosis of DYRK1A. It would harbour all the fears of Mack’s delays; will he never grow up?
One year later, my baby boy was placed in his crib without Tommy the Tube, the g tube that aided his feeding issues for four months. I was elated, and kissed his flat bandaged stomach, admiring how his pyjamas sat. I soaked in the closeness of his body against mine as he drifted asleep for his nap. My family and friends congratulated me for Mack outgrowing his feeding tube and most comments left me feeling proud, like I had finally found my footing as a mom. Although well meaning, other comments left me gritting my teeth, implying the tube was never needed to begin with and thank god they no longer had to know about this weirdness. ‘We never liked that thing’ and ‘you should sue the hospital’ were all meant to be encouraging word but I would reel for days in how isolated I felt from these people who were all looking to show us love and support.
The G Tube nurse had told us that his stoma, or Huey the Hole as we dubbed him, would grow over within a week or two.The small hole was no bigger than an eraser tip in diameter but began to grow unexpectedly. The biweekly treatments of silver nitrate were assumed to hurry healing but they came and went with no success. During this time, a small comment ‘there might be leakage’ said by the nurse who removed the g-tube would play on repeat as I struggled to survive the healing of Huey. Mack’s hole was a direct line into his stomach, and when there was a small amount of spillage from his belly in the first few days, I refrained from panicking.
A Typical February Afternoon
By the time we hit the second month mark and his food was still spilling out like a cruel broken cup, things felt bleak. The leakage was so unbearable that I would change his shirt up to fifteen times in a day, trying to keep the area dry and clean. Macklam would scream in pain for so many hours of the day, a cruel rash forming around his hole, red and scabbed, worse than any bum rash he had. Blisters started to form and break, leaving broken soft pink skin exposed to his shirts. We took to covering it in a thick layer of bum cream every diaper change. Soon this became hourly, wiping away the milk and food spillage with gauze, blowing it dry and reapplying bum cream and a fresh shirt. It would last around 20 minutes before the spillage would stain his shirt again.
Just after valentine’s day, I was in the throes of Huey the hole’s chaotic rein on my life. It was a sunny winter day, the kind that looks warmer than it was. Travis and I were in the basement after a few hard nights with Mack. I longed to be in the sun but my energy felt zapped as soon as I thought about the work to pack Mack into the car. I changed his diaper and lifted his sweater to see the mess that was left through his stomach hole. My throat caught. Each time I saw the mess that his hole was making, I felt an ache of guilt and helplessness. I am his mom, I am meant to protect him from harm and pain and yet I was the one to take this tube out of him. Mom guilt? Is this what they mean? His rash was especially bad as I used gauze to gently dab up the food on his belly. Mack let out a wail as the gritty pear puree ground into his rash. My hands couldn’t move fast enough. I knew he would feel relief but getting to that point made me feel sick. The tears started up again, the anger and frustration with our situation. No one was to blame but me. I thought of all of the milk I had worked so hard to get into Mack’s belly and the voices of old NICU nurses echoed in my brain, measuring mls and ozs lost. I told Travis I was going to weigh him again, I’m worried he isn’t getting enough milk. He let out a careful sound that I knew meant what I was doing was self torture. It had been a long week of emotions for me, my back ached from bending over Mack on the floor and my throat was permanently prickly from all the crying. I would try to update Travis when he got home from work about each thing I did but the mundane movements that blended together didn’t seem as compelling as the giggle fights and fun moments. Travis couldn’t understand why I continued to do the amount of work I was doing and seemed to be trying to hold me back…but from what? To me, it seemed to be holding me back from helping Mack. But to him, perhaps from the edge of the cliff I was building for myself. He wanted me to have relief and a break but had no understanding of all the details of what was happening or why. I was monstrously territorial over Mack and his care at this time, feeling the sole responsibility of fixing the hole that was created. I feed him, I will fix him. I am his mom. Once Mack’s face eased to relief, I smiled at him and pretended to bite his feet, a little game he loves. A big baby laugh erupted through my little man’s throat encouraging me that I was momming correctly. Dry shirt, new start. I stood up to put the dirty clothes away and looked down to see a small wet hole starting. One laugh and out goes a ml of milk or puree. I started to cry and Travis wrapped me in his arms. He liked to tell me it’s okay but I knew it was not. I knew that this was just the beginning of disappointments, delays and frustration and I couldn’t find a light at the end of the tunnel. I reached down to put on a fresh shirt, sobbing over Mack’s confused expression. Travis lifted me up gently by the arm. Just leave it he said softly, his mouth finding the top of my forehead in a kiss. I can’t. I can’t just leave it. Leaving it is dirty and makes a rash that causes pain. Doesn’t he get it? Can’t he see? Can’t he understand that I’m on a hamster wheel and I need someone to pull me off? Later that afternoon, we drove in silence to the lake. He knew I needed sun and I just wanted a new place to feel sorry for myself. We got out over the water and Mack was snug in his winter jacket and stroller. The sun was magnificent and felt like relief, like childhood days playing with friends. We rolled Mack up to the empty beach and watched the mountain tops reflecting off the water. It was only a handful of years before that this was where Travis and I would have flirtatious dates in the summer and wet kisses swimming. I took in a full breath and watched him snapping photos of Mack’s smile. He might not have understood what I was going through then but he loved us and for that afternoon, it felt like enough to get me through. I pushed aside the fear of what I would see during the next shirt change.
Missed Milestones
Mack was ten months old. What did that mean?
Well if you ask Google or the nonsense apps obsessed with milestones that I added to my phone before Mack’s diagnosis, you might hear words like cruising, pulling to stand, scooting or crawling. I would flip through social media where every kid’s parents around Mack’s age were sharing their milestones. Smiling faces and pride in their child’s accomplishments. I was lost on how to communicate with these fellow moms without either quieting my experiences or telling them the truth which was followed up with ‘well at least he…’, ‘every kid goes at their own pace’ or ‘he’ll figure it out! I just know he will’. On these days, I would be carried away with fears. I would imagine Mack in the future; Would he ever fit in with these kids? Would he ever make friends? Would he ever want to move? Would he need equipment to help him move?
Each upcoming milestone felt like a fresh start: maybe genetics were wrong, maybe my magical son would overcome the odds, maybe we would be a movie or book ending, ‘they never thought he could but he did’. And each time he slipped out of the Google dictated window of average milestone achievement, I would curse myself for having hope. Strangers would kindly comment as they saw us in the park ‘They’re so cute before they’re walking and talking eh?’ and I would cringe. ‘What is he 5 months old?’. I would smile and nod dumbly.
One Sunday, I woke up from a long nap with aching and full breasts. I put Mack on me and caught myself marveling at our last accomplishment. I reminded myself that he will meet these milestones when he’s ready. Mack drank so naturally and with an eager happy sound and I nearly forgot the struggles of the months prior. I smiled and felt his tiny body up against me. I traced his cheeks and chin with my fingers, his skin the same temperature as mine. So warm and sleepy…and wet. By the time I realized what was happening, my shirt was drenched with fresh milk which had slid in and out of Mack’s body like a waterslide. I scoffed aloud, placing a receiving blanket between us to soak up the spillage coming out of his belly hole. Regret, guilt, anger, all the emotions bubbled over.
My ever watchful mom had witnessed moments like this, my exasperated sighs and numerous shirt changes. My mom, the woman who raised us with no money in a trailer and never let me know that most kids had more than one barbie. My mom, the woman who created a home for my Barbie out of laundry hampers and empty cracker boxes. My mom, who reminded me there is always a solution even if you have to think outside the box. My mom dropped a piece of fabric on my lap. It was a thick belt that would cover Mack from armpit to pelvis with a pocket in the middle and velcro on the ends to fasten it. The pocket would hold a menstrual pad which could be disposed of every hour or so when it was filled. Machine washable, life saving, this was just one of several life lines that my mom created for me. Although it didn’t help with the pain and rashing, it became a practical accessory that helped us on trips to therapies, out on walks and ensured I would no longer need to do laundry multiple times a week.
Once the belt obscured his leaking, I got my first taste of what an invisible disability looks like. On a visit to relatives, the topic of his tube would come up in the past tense ‘aren’t you glad that thing is gone?’ and the question would linger. I would smile but my mind started to wander. Was I glad? Would I pop it back in if it was an option? Mack would often cry and whine when Huey the hole would get agitated and the rash grew too large. People hearing these cries were always full of answers; Maybe he’s hungry? Maybe he needs more breast milk? Maybe he’s cold? Maybe he’s tired? I would explain that his cries and fussing were due to his hole. I would explain how it worked, why it was painful, even show them what it looked like. They would wince at the sight of it but persist with the suggestions. ‘When my son would cry like that, it was usually that he was…’ cold, hungry, thirsty, bored, you name it and I heard it. No one believed me and once his shirt was on and there was no sight of the wound, they would engage with suggestions as to how to care for my baby. Their words were assertive, he is just like every other child, you are just like every other mom, don’t think your life is any harder than anyone else’s.
Therapy
The morning of therapy, I had wrapped Mack’s belly in his homemade belt and it gave me strength. Not a traditional mom to mom gift but one that empowered me to head into his physiotherapy. I got my phone prepped with songs from Moana to calm him if he was in pain and plenty of bum cream and gauze in case we had to do a ‘clean up on aisle belly hole’. I packed four shirts and two pants, just in case. I felt prepared. The team greeted us with smiles and encouragement “he’s grown so much!” I felt warm being around these women who had worked with kids like Mack and would remind me, with kindness, that each kid moves at their own pace and in their own way.
Today’s therapy team was Elaine and Elizabeth. Elaine, our physiotherapist, is one of the first professionals I warmed to, reminding me that people could be fully good and kind without agenda. On our zoom calls and meetings outside, her big smile was meant for Mack who was admittedly oblivious but I reaped the benefits of her kindness. She would dress in comfortable and colourful dresses and I was transported to kindergarten and the adventure of wonder that childhood brings. She helped me see the world through Mack’s eyes and marvelled alongside me at his successes. Her enthusiasm for Mack’s unique personality reminded me on hard days that he could be loved by someone besides me. Her emotions would brim over without boundaries, sometimes letting tears well up in our sessions, unabashed, gushing at my love for Mack and making me feel seen as a mom.
Elizabeth came into our lives before Elaine, a face on a screen for many months before we met in person. A tiny woman with a soft voice and an eagerness to learn all aspects of child development. She has been the queen of throwing positive comments our way that have helped me put an armour up on rough hopeless days and helped me let my armour come down on days I wanted to share without fear. She often would sit quietly when I updated her but I could tell her brain was combating which of a million things she wanted to offer to help. She would lead our team of therapists, always having the answers and replying with emails or in person with empathy and compassion. Our development centre became a safe place to mother the way I wanted and for me to learn the best way to guide him. On days with the leaky belly hole, I was more reserved, I feared them seeing us this vulnerable and wondered if I would still feel like a super mom if they knew what things were like day to day.
That day, I began answering questions from our team about Mack’s developmental stage and soaked in any ideas they gave me. Elaine outlined the next steps of development for Mack including rolling and getting into a crawl and I could feel the prickle of tears at the back of my eyes. We would try vainly to get him to reach out for furniture or a toddler walker to entice him into movement. He would look at me, confused, before his arms would go limp at his sides. No thanks mom, I don’t want that. Elaine cooed at Mack and asked if we are able to do any tummy time to help him gain strength in his arms and shoulders. I nonned as if it was not a problem, wanting to get an A in momming from our team. I would not explain the exhaustive measures of trying tummy time over a towel and watching the liquid in his belly pour out, watching the weight we were trying to put on him soak up into his towel. I didn’t tell her about the screams of pain from his belly hole and crying over his little body while he writhed in pain, feeling helpless. I wouldn’t fully get into the heartbreak of offering Mack his toddler walking toys to watch his confused gaze and his arms grow limp at his sides. I wouldn’t explain how putting him in a crawling position made his feet turn blue for an instant because his mom was so eager to see him crawl forward but he wasn’t ready. There was something holding me back, not trusting that any place could be safe for such strange experiences as ours were these days.
As I spoke about what we’ve been trying so far in an overly chipper tone, I saw a cloud pass through Elizabeth’s eyes. I followed her gaze to Mack. He was sitting up with his belt sliding up his body and the milk visibly leaking out down his shirt and pants. I laughed, oh you know how it is…except no they don’t. My face flushed and stomach turned. I felt as though I had been caught tripping up the stairs or my skirt was caught in my underpants without my knowledge. I couldn’t stop my brain from wandering down the shame spiral. Him and I are weird and wrong. My child has milk leaking from a hole in his stomach, he’s making a mess on the mats at our therapy team’s centre that are trying to help us. The two kind women asked if I needed anything to help with the clean up. A strained laugh came out. I'm fine, I'm fine, I just wish he would move is all, I wish he would roll, crawl, scoot, shimmy, do ANYTHING but lay there leaking. Only a shaky laugh came out. As I hurried to get him appropriately covered and dry, Mack started to fuss and we had to cut the appointment short. Two weeks looking forward to this conversation and it was agreed that we touch base after Huey healed. I felt a mix of shame and relief that this would be the last time we would need to do this with Huey. As I strapped Mack into his carseat, he caught my damp eyes and his gaze was serious and concerned. Oh buddy, I’m sorry I can’t be better for you right now. Driving home, I would make up fabulous stories of how mama knew things would be okay. He didn’t need to hear them, but I did.
Surgery Day
In late February, Christine the g-tube nurse emailed me recommending we plan for a full surgery to close Mack’s stomach hole. I remember the exact moment I read it, I remember the relief and fear rushing over my body, crying on top of Mack, more concerned with a twirling toy than his mom’s emotions. Our busy house of five was empty and it was only Mack that heard my sobs echo through the kitchen, exhausted tears full of the hope of relief.
The surgery came three weeks before I was due to go back to work full time. At eleven months, Mack had mastered sitting up and was sleeping a solid 10-12 hours a night but refused to move in any direction. He would babble when he wanted to, infrequently and never if anyone was around that wasn’t from our household. The day of surgery, he was not allowed to eat or drink for the two hour drive to our Children’s Hospital. We settled into our room and they handed me a gown that went down to his ankles. What began as two hours of hunger soon became five and six. A kind nurse popped in to update on the delay and suggested juice or water to fill him up for the time being. She had no way of knowing that getting him to drink anything besides from the breast was useless at this point. Piles of cups had ended up in our cupboard with no success. The nurse returned with apple juice and I smiled and pretended that he would just love this. Mack sat in the pre-op bed in a pink and white patient robe, sad and hungry and I sat with apple juice. Isn’t it ironic that tube feeding this would make his life so much better in this moment? I laughed at my own joke. Mack didn’t think it was funny. I tried showing him how to sip from the edge and filled a syringe which he refused to open his mouth for. Finally, the spoon for his puree was sitting in the bottom of my bag. Would he try it? I dipped the spoon in, making loud happy noises and drinking it myself. His skeptical little eyes narrowed. What are you up to mom? I offered the spoon to him and he drank the juice without issue. Yes! Success! I was elated and let out all my mama hurrahs. A nurse came in to ask if we needed anything and I laughed manically “he drank from a spoon!” Her eyes widened. Not out of excitement or disbelief but likely from fear over my strange enthusiasm for my kid drinking apple juice. Mack and I took photos and videos. I felt useful, like I was getting something in him, helping his belly stay full even if just with juice. It was maybe an hour later when he laid down in the bed that I realized most or all of the juice had leaked through to the bed below him through his hole. I closed my eyes. How do I keep forgetting? Towels, new clothes, blankets, reset. Damn this hole, I was ready to never see Huey again. The surgeon that popped in before our time was the same kind man that had placed the tube originally. He was a handsome, tall man with ginger hair and bright eyes. He smiled when I corrected his name for the hole ‘no, no, it’s Huey, he has a name’. When he left for surgery, his eyes sparkled and I trusted him fully…I had to. The surgery went well and Huey disappeared into the night, replaced with what we called ‘Sammy the scar’ who has now become just another part of Mack’s body and a story he’ll never remember.
