Author: Candice Brown
This month, we have the opportunity to hear Candice Brown’s birth story. She is a first-time mom to son Macklam who is currently 9+ months and was born during the pandemic. She shares her heart-felt journey — living 2 hrs away from home during COVID lockdown, feeding difficulties in the NICU and processing the DYRK1A diagnosis.
Note: Emotional content may elicit strong feelings. Read time ~30 minutes.
My Birth Plan Goes Out the Window
I reached over my third trimester bump to pick up the remaining blue and white plates from the living room. The balloons had begun to unstick and I smiled at the success that was my first baby shower. We were surrounded by love and support and best wishes for my soon to be little boy. To Instagram and Facebook, it was the same as every other shower; blue and white decorations, smiling faces, a cute maternity top and sparkly gifts for a nervous new mom who had no idea what was coming. To my mom and husband, they watched a nervous new mom clench her jaw at each mention of a “happy and healthy delivery and baby” because, for the first time in my life, I questioned what “healthy” means and revelled in the fear of the phone call received the night before. It also didn’t account for the future understanding of “healthy” based on an impending pandemic which, at the time, still seemed to only reside in Asia.
When I answered the call the night prior, my midwife’s tone was new; one of caution and pauses to read my tone. She informed me that my results for the growth ultrasound were irregular and the most shocking numbers she had ever seen. Our baby Mack was measuring under the 0 percentile in his femur length, a sign of a genetic disorder. As well, the scan showed a high amniotic fluid level and a swollen kidney. Midwife recommended we go to BC Children’s Hospital, two hours away in Vancouver to get more scans done.
The two days of scans and results came in a blur with snapshots etched in my memory. I remember our optimistic smiles to one another as my partner and I entered the hospital. I remember the ‘discovery’ of a heart abnormality and my husband's eyes brimming with tears at the suggestion that these signs of a genetic disorder could have our little man incompatible with life. I remember feeling his hand squeezing mine as they punctured my stomach with a giant needle for the amnio. I remember telling people that my partner and I are a fortress and our baby will be safe and loved no matter what. And those people responding with phrases that made me uncomfortable “you’re such a hero” “you’re an inspiration to us all”.
Was I a hero? Coping with the reality of your kid being different and knowing you will have challenges other parents don’t, does not make you feel like a hero. Heroes aren’t depicted feeling scared and alone, consistently worrying they won’t be enough. I had to remind myself in those days heroes don’t start out as heroes, they have lessons and challenges to overcome first. So there was still hope.
Coming home after these days, my birth plan needed to be tipped out and started again. Goodbye birthing suite with a midwife, holistic forms of pain relief, coming home the day of Mack’s birth. The things I feared most would now become my life until I could bring my baby boy home with me: doctors, needles, medicine and machines. The doctor recommended relocating to Vancouver, 2 hours away, in March 2020. The same month our province went into Covid-19 shut down. With this came another plan tipped out and started a new: the weekly medical appointments attended by my partner or mom? I would need to attend solo. The park nearby where I planned to waddle around keeping active? Blocked off to the public. I was mostly barricaded in a house that wasn’t home, fearing the unknown germs outside the door. I had read stories about women isolated from their newborns due to contracting Covid-19 and this fear had me paranoid.
Following our appointments, the amnio results came in slower than expected due to Covid-19. Out of the four tests, three came back genetically average. My family smiled and hugged me but I felt a constant knot of fear. I started to have nightmares about the exome testing, the one test that we were told likely wasn’t going to come back with anything scary.
As my due date got closer, I was itching to meet Macklam. His goofy personality was so apparent from my belly; kicking when I played kids music and bucking his dad whenever we cuddled. I needed to know my little man, needed to dress him in his cute little clothes and wrap him in the flannel blankets I was packing and unpacking in the baby go bag. It was about once a day I would get a wave of fear; would my baby make it out safely? Would I? Would Mack be breathing? I thought of every worst case scenario and tried to push them away. My heart broke at the realization that my mom was no longer welcome in the birth room as I could only have one support person. I cried when she left the Air BNB, feeling the shift from being someone’s baby to someone’s mom and the sheer responsibility of becoming this baby’s world.
Ready or Not, Time to Meet Baby
We walked into Women’s Hospital full of nerves and excitement. My cervix was completely closed (which feels only mildly insulting) and my brain was wrapped around being induced “for our safety” and how that would feel. My water broke in the evening and once the show began, it moved fast. From 8pm to 3am, I had every birthing term thrown at me that I had read in the chapters I grimaced through of my pregnancy books. Cervical check, dilation, contractions and pushing were all things I was ready for. The epidural, IV, oxytocin drip, low baby heart rate, infection, fever and having blood taken while forceps were assisting my birth were not expected. My most painful memory, however, was not the contractions or forceps but, rather, the nurse who stood at the door thumbing through my file and reading out each terrifying thing we had learned in the last few months about our baby and possible signs of abnormalities. Between physical painful contractions, she seemed to ruin the peace in-between by reading out lines each doctor had said to me before including genetic abnormality possibilities, complications, defects, smallness. My heart and body ached.
When Macklam came into the world, I was trying to zone out the 20 or so medical staff milling around, and the two NICU beds with full medical equipment. Just make it through this and he will be here. Mack’s presence brought a hush across the room. He came out with no sound. I took a breath of relief while everyone tensed. I somehow knew he was breathing and healthy. I felt it.
When Mack was put into my arms, I was excited but felt oddly disconnected from him. Who are you stranger? How were you my roommate for so long and yet so unfamiliar? The immediate bonding and love that I had heard so much about seemed to take longer than I thought. Now, I believe it was a bit of self protection assuming my baby might not make it home, having the whirlwind of words from staff hanging in the air “could not be compatible with life”.
On the second day of my son’s life, the intern for genetics came in, masked and gloved, with her phone. An aging man spoke in and out as the signal cut out. What I could gather was that he was a doctor of genetics. We had heard his voice the day of Mack’s birth saying he appeared genetically average, apart from a club toe and recessed chin. Now this same man started his speech with “unfortunately” and took the world's longest pause.
Exome Test Results Come In & Feeding Difficulties Ramp Up
“We got the results of your exome test and I am sorry to say, the results showed a deletion…” I stared at Mack as he looked into the air around him, adjusting to life out of my belly. He would never remember this moment but I always would. I took notes to absorb everything the geneticist said which was…very little. A rare chromosomal disorder which has only 200 people in the world that are diagnosed.
Mine and my partner’s digesting of the diagnosis came at different times but followed a similar pattern. Our first few days, we were able to digest the tip of the iceberg “it’s okay if he can’t read very well or struggles in school”. On the third day, my mom came to visit outside the hospital, unable to meet her baby grandson in person. She was eager to share in the research she had done on DYRK1A, explaining how some of his physical attributes matched the diagnosis. I remember her using the term “special needs”a lot and cringing each time. I was finding adjectives to describe Mack on my own time in the first week of his life: dramatic, sweet, goofy and special needs just felt like an impossibility.
With each passing day, I began realizing my feeding journey was not the same as other moms who had offered their support. Day 1, we were told Mack was struggling to suck due to his high palate and recessed chin. Day 2, a nurse who prided herself on bottling techniques asked our permission to try to feed him with formula orally while my milk came in. I agreed and watched her explain several ways of getting him to latch. Milk poured out of his mouth and she finally started pacing him as his breathing would stop while drinking. She was confused and turned to me to explain his behaviour. This became a theme throughout the NICU stay. I felt like they were asking me why he couldn’t take his food and I was completely useless, left with a feeling of anger towards them for not having the answers for me.
By day 3, it was established that Macklam had a weak suck (after working with him with a soother), regurgitation to the point of puking up his full meal and no suck swallow breath coordination. We were told an occupational therapist would come in if necessary to assess his eating.
The tube feeds continued while I pumped every 3 hours to get my breasts working. I woke up on night 3 shaking uncontrollably and, after a 4 hour urgent care visit, learned that was how my milk coming in looked in my body. Once those few drops of milk started to come in, I became obsessed with providing something for my baby, the only thing I had full control of. I wrote giant letters on our white board “BREAST MILK ONLY” and checked each syringe of milk to ensure it wasn’t formula. I have never been anti-formula as I was raised on it but the idea that I could sustain my baby in some way became paramount to the start of my self confidence as a mom. My body had an unfamiliar ache to hold my baby but often the wires and tube would stop me. I would put my hand over his head and pet him, waiting for a nurse to help me unravel each chord so that it didn’t set off the machines to place him on my chest. Many nights when Mack was crying and my husband and I tried to soothe him, we were left a ball of anxiety and sadness, caught up in chords, feeling useless and wanting to be home.
The days consisted of endless professionals coming into the room with news or updates, appointments and pop ins. It was an exhausting and unpredictable schedule.
Breastfeeding attempts with the lactation consultant were both a joy and a terror. I used a nipple shield to entice Mack on to the breast. His latch was weak and milk transfer was impossible at the start. The breast shield would slip off easily without the latch and I always felt placated when a nurse would congratulate me when he was on the breast. I knew it looked like he was drinking but, in fact, he wasn’t. We discovered his response to milk in his throat was one of panic, he would pool the milk (suck, suck, suck) then it would begin to drip down his throat and he would panic, holding his breath. We would have to wait for it to pass, hoping he catches his breath again. Twice in our NICU stay, his spit ups would lead him to breath hold and the suction tool was required to help him get his breath back.
By the time Deb, the Occupational Therapist, was called, I had found a groove with Macklam on my breast. Twice a day I would work with Mack to attempt breastfeeding. It was the most exciting and nerve wracking part of my day. Nipple shield, breast feeding pillow, organizing the hold, holding his tiny head in my hand, now weighing less than when he was born. He would partially latch and suck enough to get milk in the shield, then I would pace his sucking. One, two, three, I would pull him off to take a breath. I simulated the coordination he needed. We would do this for 15-20 minutes, watching the machine dip from 100 to 95. He would come off the breast and recover his breathing. It felt like simulating something so natural but so impossible for my little guy. It made my heart ache and I would cry after, feeling like this was a game of pretend and Macklam would never feed. When OT arrived, I was elated. I imagined using the bottle to pace the way I had on the breast would be much easier since we could choose the right nipple and control the milk flow consistency. Our OT arrived full of new words; side lying, premie nipple and Dr. Browns. She was pleased with his eagerness for milk, letting Mack lead the feed. The nipple went in and he sucked; one, two, three, four, five, six…my heart raced. Nope, nope. She should know, 6 is enough. But she’s the expert. The machine binged and she looked up, shocked. She pulled the nipple out and he squealed and held his breath. I explained his pattern and she didn’t respond to me. My heart was broken as her hopeful face turned sour. She looked up at me and I saw a familiar expression I hadn’t placed yet. Pity maybe? She popped in with a write up; an OT report card. She gave me a nugget of hope: the next visit she would find the answer for his feeding issues. I fervently searched the DYRK1A site for answers and suggestions.
The first video that popped up on the group feed was for a Gofundme for DYRK. I had NO clue what to expect or how different each person’s experiences are. The video had an adorable kiddo walking (oh my gosh amazing!) and playing, full of joy. My heart swelled and I smiled, this would be Mack! It panned to a mom and dad and my heart sank. Their eyes were red and sullen. They said the words that would circle my brain on repeat “I went from hoping and preparing for my little girl to get married to now preparing for our eventual death and who will take care of her”. Smack. Reality. Mack may not ever be independent. Smack. He may never leave our home. Smack. He may never eat unassisted. Smack. I imagined the couples with sick kids, asking for money to help them in their unfair, awful journey. Were we those parents? Will we be those parents? Would an email go out in the office asking for financial assistance…please go and fund ME because my life has taken an unfortunate turn to where I will need to be five times the parent…always… I don’t remember the decline that afternoon but I remember silently crying in the hospital bed and a nurse coming in and calling a social worker. My whole life has been a very very blessed one with very few times I have felt that kind of dark pull. And that day, that nurse saved me from the dark pull of the reality of our diagnosis and the biggest fears you can imagine when you’re holding a tiny little innocent babe.
When Deb came that afternoon, I had given myself time to grieve and was ready for hope: new bottles, nipples, fresh warm milk straight from the breast, my heart in my chest, holding my baby’s hand while he looked up at me excitedly “Milk?” Yes baby boy, milk made straight from mama. It was a total of 5 minutes of Deb bottling and two dips in the machine before she turned the bottle up and looked at me. “I don’t think it’ll be safe for you to bottle feed him without a swallow study”. My husband was behind me, holding my shoulders and I felt his hands go limp. We were explained why a swallow study was necessary, to ensure he would be feeding safely and not aspirating.
The Only Way to Leave the NICU was Surgery
The last week of the NICU stay went by rapidly. After our first swallow study, a second came. My partner and I went back and forth requiring the other person to be a single fortress, holding up the mud that we became on rough days. We left the NICU beds for a hotel nearby to get a bit more rest and to recover from the toll of all the doctor’s appointments. We enjoyed the hello each morning with Mack and watched him wake up, stretch, hands behind the back of his head in that cute way he does. We gave him baths with the NICU scentless soap and I started to dream of all the baby things stored in his little nursery that I was excited to use. We battled his “regurg” depending on the nurse on staff. Some were moms and if he had a small wet spot under him they declare it “normal” and not log it. But there were other nurses who would guesstimate the amount and log it in his giant file. I hated those nurses. They constantly tsked at his 5 ml spit ups and would state things like “he doesn’t seem to tolerate this feed speed” or “there are medications for regurgitation that I’ll make a note for the doctors to talk to you about”. Our go bag had 4 swaddling clothes and burp clothes that I would, on good days with less spit up, wrap Mack up in, feeling the flannel touch his skin. I loathed the mornings when I would come into the NICU and find the flannel blankets folded up in a bag with a sticker that said “SOILED”. It began to represent the hope of going home. Each time I wondered “will this swaddle stay clean for the ride home?” And then nope, “soiled”. I would clean them and we would start again. Day after day. I continued two breastfeed “attempts” a day. I started to dream about the amount of sucks before he needed breath. I dreamed he was on my chest in the hotel, waking up to feeling lonely and missing him. I would wake up every three hours for pumping in the hotel, quietly putting my bottles in the hotel fridge, waking up and packing them up for the NICU. We were on a consistent three hour schedule of 90 minute tube feeds. My husband and I became frustrated with nursing staff running late and adjusting his schedule by an hour here, an hour there. I started discussing with him what an NG insertion would be like at home. We came to terms with the fact that likely we would need to ween him from home. How long would that take? A month maybe? Maybe one NG tube insertion? Watching the nose tube be inserted into Mack’s small nostrils was hard enough, the idea of doing it ourselves felt impossible but if that was our option to go home, I was willing to figure it out.
Our lower GI study, the second feed study, was deemed to be the turning point for Mack. They explained if he isn’t aspirating, they would be able to find a nipple that worked for him and get us feeding him for our way home. We were excited at the prospect but cautiously optimistic. Nothing went the way we thought in NICU. I got up the courage to sit in on the feed study, nervously ringing my hands out as we wheeled him in. I had the urge to hold him the whole way down but, for hospital reasons, he remained in his bed, hungry and irritable. The GI study was conducted using a giant machine that took up the whole room and contained a seat made for a 5 year old, hard and large. Mack was far too small and required blankets and swaddles to make him fit. The OT upended a bottle into Mack’s mouth and they recorded. One, two, three, four, five, six…..seven, eight….ten, eleven, twelve…my mouth hung open. He wasn’t breathing. The machine was delayed, always was but I knew he wasn’t breathing…the machine started to beep and they continued. twenty…twenty one…his squeal came through the milk and I started to cry. I was behind the plastic, helpless, as I watched staff suction out his mouth. What the heck is this place? Where is the exit?
It’s hard to explain to someone that has never felt the feeling of being trapped in a medical capacity. Wanting to leave but being told it is in your best interest and your baby’s interest to stay.
The results of the study showed a ‘slight’ aspiration. I gritted my teeth. Slight when you upend a bottle and send my child into a panic where he’s not breathing…yes, that doesn’t surprise me. My mom later compared it to my own fear of the water. I have never learned to swim and one mouthful of water leaves me in a panic to find air and a way out. Mack would go through this any time a bottle or breast was left to him without pacing.
After this traumatic study was done, the OT left her final report card stating she felt comfortable with me breastfeeding Mack when we left (carefully, pacing etc) but wrote in red bold letters “no bottles”. I spoke to a paediatrician after this who assured me that breastfeeding would not be recommended as my child would aspirate on the milk. I argued and eventually learned there was a large disagreement amongst professionals whether I was capable of keeping my child swallowing safely through breastfeeding…a real confidence builder as a new first time mom.
In the final week of our stay at the NICU, my hopes were broken. My husband was surprised by my usually sunny personality being replaced with pure pessimism. The glass was no longer half full. One paediatrician sat with me to explain why we couldn’t go home on the NG tube and that a full surgical G-tube would be Mack’s only option and that he might get off it but it’s also possible he may not be capable of eating ever. I nodded numbly and said okay. I watched Mack get wheeled off to get his tube put in. I cried over his perfect, smooth belly. I said goodbye to having a pure, untouched little human. He came back with a small piece of medical miracle inside his belly. Giving permission to have them do this to my baby felt like a personal failure, like giving permission for my baby to be injured.
My relationship with his belly tube has been tumultuous. I was explicitly told this would be our ticket to get us out of the NICU, the hardest month of my life. I sat through the lessons and took avid notes. My husband was eager to learn quicker than any other family so we could make our way home. We learned fast and were frustrated when anyone got in our way. Let us feed our child, we can do it. Leave us alone. We texted family “we can’t wait to get home” to rude responses like “oh you just wait, enjoy the sleep you have now” no one could relate to what we were dealing with and we felt achingly alone, unable to have anyone meet Mack or know him.
It was Mother’s Day when we finally left the NICU. It was fitting that each nurse and medical staff seemed to forget the occasion. The morning wait for a doctor to do Mack’s exit exam was agonizingly long. I’ve heard a lot of parents explain the feeling of leaving the hospital with a fragile baby; so new and scary. They talk about not being sure they can keep this baby safe, nervous when they were driving with them…it was not like this for us. We packed Mack up in his carseat, the one we stared at each day in the backseat waiting for our leave day, and I was acutely aware of how tiny and pale he was. Was this normal or did the NICU do this? We did not walk from the hospital, we ran. We craved a new beginning where Macklam could be a baby and not a patient. I missed my family, my things and wanted away from the masks and smell of hand sanitizer that was the hospital.
I had always considered the NICU to have somehow stolen the expected experiences of parenthood from me that first month but, as I ventured out into the sun and my husband carried the boxes of medical supplies, I realized the parenthood I expected will forever be shifted. Mack had already fallen asleep, his chin dimple to his chest, his tiny body surrounded by nurse receiving blankets for support, his newborn outfit oversized. His cupid mouth rested in a small pout and it melted me. Parenthood would be harder because I have a child that will forever test my strengths.
It had been 48 days since I arrived in Vancouver with my belly too big to see my toes, 25 days with Baby Mack outside my body and 25 days of enduring rounds, destats, machines and the experience of the NICU at BC Children’s Hospital. This would mark the first day as a family outside the care of medical professionals, taking on the upcoming challenges together as a little family.