Story #110 - Catherine, Québec QC (CANADA)
I have an almost five-year-old daughter, but I feel like we only began to have a normal life two years after she was born.
I had a good pregnancy and difficult birth. As for the postpartum period, I'm not sure I have words for it yet.
Then when she turned two, she was diagnosed with cystic fibrosis.
I was blessed to get pregnant quickly after my partner and I decided to have children.
I didn't want an epidural when I gave birth to her, but I ended up with one. After they installed it, everything went wrong. It wasn't fixed properly and never worked. It took them five hours to figure it out, and they never wanted to tell me what had happened afterward. It took them three more tries before it stuck properly.
When I finally got relief, I was able to push her out in a somewhat good atmosphere. But when she came out, she'd swallowed a lot of meconium. I barely had time to hold her and put my hand on her tiny butt that they took her away. She was in respiratory distress, and a herd of strangers stormed the room. A couple of minutes later, they took her away to the NICU, my partner in tow.
I was lucky to have a doula with me, but I was in shock. Despite the constant labor pain, I hadn't cried at all. But after my baby disappeared, I cried for two hours as they stitched me back.
I was happy to be put in a private hospital room, and I'm not sure how I would have coped being in a shared environment with another family who had their baby with them. Once I was settled, I was allowed to see her. It was so incredibly challenging to watch her in the incubator. She was plugged onto a bunch of cables, and I wasn't sure if I was allowed to touch her.
Thankfully, she got better quickly, but the contrast between giving birth to her and only seeing her hours later into a bubble of plastic was striking and quite traumatizing. It was so strange to see her, a 7.5 pounds kid, among premature babies. I couldn't connect the dots, and no one explained to me what had happened to her.
I remember getting lost in the hospital trying to get back to my room. I tried to rationalize, thinking that the medical providers had other things to do rather than explaining what was going on, caring for me, or telling me how to return to bed. At the same time, I couldn't help but think that what was happening was serious, and I deserved to know. It felt like I was left on my own, trying to navigate both realities.
It's worth saying that I also had severe complications due to the botched epidural. The first one was the problem and caused a dural tear, a perforation of my spine where the spinal cord leaked cerebrospinal fluid over time. It instantly caused headaches, and I had terrible backaches. It took me a day to realize what was going on: every time I'd stand up, it was like someone had hit me with a crowbar. Laying down was okay, but I had a baby in the NICU and couldn't afford not to be mobile. I felt horrible.
They explained to me that the solution to this problem was a blood patch. The doctor had to insert another needle to get a clot in that would seal the leak. At first, I was like, "There is absolutely no way you're going in there again." But the pain was so unbearable that and I eventually gave in
My partner and I left the hospital with an empty car seat a couple of days following her birth. There is nothing that can prepare you for that.
Then two days later, the seal on my spine gave up. I had been trying to pump and asked to meet with a lactation consultant, but as soon as I sat on the couch, the crowbar feeling came back. By then, I wasn't allowed to go back to the maternity ward and had to go through the ER. The anesthesiologists knew it might happen and had told me to go straight to the NICU, but when it did, none of them was available to see me. I spent two hours laying down on a stretcher before they could try to fix me.
I kept feeling like I couldn't be there for my daughter for the week following her birth. We didn't have a car, so I had to take a bus. I remember standing because sitting was too painful, five days postpartum, holding on to a metal pole in a packed bus, on my way to the hospital.
When I finally got better and was allowed to see her, everything was so confusing. Our baby had been released from the NICU after three days, then transferred to the nursery, where they keep the babies when the mothers have been discharged. Everything was fine with her, but they kept telling us she couldn't leave. Once again, no one explained to us why. The nursery was jampacked at all time. There were so many parents with so many noises, and it was incredibly stressful; one of the worse experiences of my life, really.
We were expected to conduct the daily care of our baby (bath, diapers changes, etc.), but at the same time, we were not allowed to sleep there. I mean, some parents were, but not us. Once again, no one told us why.
We also overheard so many judgments from the nurses there, both against the parents who were always there – so annoying and in the way – but also about those who rarely came – careless and irresponsible.
I didn't know what was expected of us, and it was incredibly painful.
Everybody had told me before I had my daughter: "Follow your instinct." But in these situations, your instinct doesn't work. Whatever my guts told me, it didn't suit the situation. And throughout everything, I had this urgent feeling to "save" my breastfeeding. I saw a lactation consultant five days postpartum, but it was too late. My milk had come, then had gone away. My body was under so much stress, and I kept telling people around me: "Don't you see how important breastfeeding is to us?" but no one listened. I felt like I was going crazy.
It didn't help that my daughter wouldn't drink each time I got to hold her in the nursery. I suspect they gave her bottles of formula (without my consent) and on top of the milk I'd sent, so she was never that hungry when I got there and was already used to the rubber nipple.
I did what I could, but I don't think it was enough.
On the seventh day, they did a test, and she didn't pass, so they had to keep her one more day. And they blamed it on me. The staff meanly asked if I had washed all the fruits and veggies I'd eaten during pregnancy and made me go through such an extensive interrogation of my behaviors that I'm still traumatized about it to this day. I kept telling them that I'd done everything right. The infectiologist speculated about it in front of everyone, even before addressing the issue with us. This led the other providers (nurses, residents) to believe it was our fault, and they kept questioning us. Ultimately, it was determined that the specimen they had taken from her had been contaminated with anthrax. It had nothing to do with our kid or us.
That same night, we were allowed to go back home with our baby.
I have a picture from that day, and it still hurts to look at it.
I was a mess. A week after giving birth, I was thinner than before I'd gotten pregnant. I'd lost so much weight because I didn't eat and couldn't heal from the birth and the spinal tap.
The second blood patch had dealt with the leak, but I still had awful back pain. I wasn't allowed to stand for too long or take her in my arms; it felt like I'd just had a c-section.
My mother-in-law came to help for a little bit, but it was so terribly hard. On top of it, a nurse from the CLSC came for a home visit and added to the trauma. In theory, at-home visits are a wonderful idea.
But she was a total bitch.
She shamed me for "failing" to breastfeed and told me I'd better "prove” her that I was committed to making it work. She demanded I schedule another appointment with my pediatrician to have my daughter reweighted. Two hours after she left, I decided to stop nursing. I remember telling my partner, "Go feed her formula. It's over." I had expected her to judge the state of my apartment –a total mess – but not my abilities to nurse.
In retrospect, I know that this whole obsession with the baby gaining weight is absolutely ridiculous. She was swollen with meconium. We also now understand that cystic fibrosis can cause the malabsorption of proteins and liquids. This means she needed to drink twice as much milk to gain the same amount of weight. Breastfeeding was, therefore, way too long for her, and insufficient.
But back then, we didn't know any of this… so it was easier to just blame it on me.
During this period of my life, I vividly felt that not being able to breastfeed bothered everybody. When I was home, doing my best, I was forced and shamed because I didn't do enough. When I went to the hospital, I was dismissed for insisting.
Look, I'm an anxious person in life so I know what it looks like. But in this situation, I don't think I was suffering from depression: my reactions were entirely justified considering the intense stressors. I wasn't "excessively anxious." I was reacting normally to an insane experience.
I carried with me the shame of not being able to breastfeed for a very long time. I cried giving her a bottle. I didn't have any choice, but I was so ashamed. I wanted to scream, "I didn't CHOOSE this!" But logistically, it wasn't possible. No one ever truly tried to help me. I could have hand expressed or nurse her on my back because I was in so much pain. I could have exclusively pumped or do mixed feeding. Instead, I was shamed, so I went on with it.
I was also incredibly scared of germs because of what had happened at the hospital on her last day, so I never used powder. I kept buying the formula they'd given her at the hospital, which was liquid (and therefore more expensive.) But I was so tired that I didn't care.
Usually, the parental leave for the partner in Quebec ends after five weeks. But my partner and I decided to take the full nine months of parental leave together, even if that meant living with only one income. I had no idea how I would have coped otherwise. I sort of expected the postpartum period to be difficult. He didn't. I remember him saying, "This is absolute madness; how do you all do this on your own?!"
Having him at home was everything. And not breastfeeding ultimately became a blessing: we could share the load of feeding her, and I was able to rest.
We decided early on that we'd slept a full night every other night. Four years later, we still do it, but I get to sleep in for the mornings, and he cares for her. It's 50/50, and it works wonders.
We both resumed working full-time when our daughter turned nine months old. It's not the norm here in Quebec: usually, people take the full twelve months.
I was happy to get back to work, but this situation completely changed my relationship to our grind culture. I used to stay late and work very hard. But when daycare closes at 4 PM, you gotta go! My priorities changed… and for the better.
That being said, a baby that goes to daycare gets sick often. I was always running after my tail, self-care became scarce, and I didn't have time for any personal projects anymore.
Then one September, a little before our daughter turned two, she developed what we believed was an ear infection. She had an ongoing fever, and when we went to the urgent care, they gave her antibiotics. But her saturation wasn't great, so the doctor asked us to go to the ER. After an x-ray, we discovered it was pneumonia. They told us antibiotics should help clear everything up.
But it didn't.
From September to the end of October, she was on two rounds of different antibiotics. She had to take inhalers, and we landed at the ER three or four times during this period. I have vivid memories of dropping her off at daycare and going to work, saying to my colleagues, "I can't wait for it to pass."
But it never passed.
We made an appointment for the following Monday with a nurse practitioner. The Saturday before her appointment, it was her birthday. We put on our rose-colored glasses to make it a special day, but everyone could see she was not well. We went to the playground with friends, and she was coughing so much she started vomiting.
The thing with cystic fibrosis is that it causes the mucus to thicken so much that the only way for the person to get some relief is to vomit. She never puked food: she puked mucus.
On Sunday morning, her breathing became incredibly fast, so we rushed her to the ER. Her demeanor was borderline – she was always a happy and spunky girl! – but because of her history, they kept her. They did another x-ray and compared it to the one from two months ago, and it was like she'd never been treated.
It took them three days. They did all the tests, gave her a higher dose of antibiotics because they believed it might be a super-bacteria. And then, they did a sweat-test, which is the test for cystic fibrosis. Very fast results. Very accurate.
The pneumologist came in to give us the result when my partner was – of course – away. He said, "We always do another one two days after, but it's usually very clear with the first one."
I remained somewhat hopeful, but after the second test, the results were the same: positive for cystic fibrosis.
My whole world crumbled.
When you hear something like cystic fibrosis, what you think of is "lungs transplants" and "dead by 15."
But the staff at the hospital quickly reassured me that things had changed, and we were immediately explained that, although the illness was complex and chronic, there has been significant improvement in life expectancy and treatments in the past decade or two.
First of all, we learned that this was a genetic illness. Both my partner and I carried the gene, and this is why our kid had it. In Quebec and Canada, we also learned that 1 in 20 people carry the gene, which is not that rare. Life expectancy is now around 40 to 50 years old, which reassured me greatly because when I was a teenager, it was around 18. We're hopeful that the treatments will have gotten even better when she reaches that age, and she'll have the same life expectancy as the general population.
There's a medication that exists that should be approved soon (Trikafta) that stops the illness from spreading [edit: In June 2021, Health Canada approved Trikafta for patients aged 12 and older. It's already been available in the US since October 2019]. With it, a patient can gain up to 10 to 12 years! We're putting a lot of hope into this. It also diminishes pulmonary and guts damages, which, when they happen, are often irreversible.
On a daily basis, we try not to think too much about her illness. And with COVID around, we are mindful of the care we provide. We have to do respiratory treatments (clapping) every morning and evening. She's lucky because now we're down to one hour in the morning and around thirty minutes at night. But if, for example, she has a cold, it takes two more hours every day.
She also takes enzymes that help with her digestion. She needs to ingest them within thirty minutes of eating. I don't know if you ever asked a toddler to eat something under pressure, but it's challenging. We have a timer in the kitchen just for that. If she doesn't take it properly, her system won't absorb the lipids and proteins.
She needs to take these enzymes every time she eats. This means that we need to be on alert at all times: if she steals a chip in our bowl, she needs to take an enzyme. This also means that we cannot simply go to a birthday party or a café because she cannot eat whenever she wants. She also takes three vitamins to boost her immune system and two inhalers daily.
This routine is when she's not sick. If she is, you double everything and add a 28-day antibiotic treatment. If after 28 days the infection is still there, we do it all over again, or she needs to go to the hospital.
Every three months, she also goes to a special clinic and gets tested for infection. We try to be proactive at preventing them, so the treatments are not as lengthy.
It's a lot. It's a whole lot.
After her first hospitalization in November, I decided to put my career on hold.
I knew she'd be there at least a month, and I told my boss, "I'm not coming back until January." They were very kind and accommodating. When I went back in January, I knew I was the one who was not feeling great this time around.
I had already gone through burnout before being pregnant, and I recognized the signs. I was still seeing my therapist, and although I was doing "better" than during my first burnout, she helped me understand that I had a kid now, and a sick kid. It was okay for me to stop before actually hitting the wall. She said, "You have to learn that your thresholds change with time. No one needs you to kill yourself before respecting your boundaries."
So I quit. I finished a big contract and dispatched the rest. The day after, I went to see my doctor, and they put me on sick leave. A month and a half after, the whole province shut down due to COVID.
Officially, I'll be on leave until June. Afterward, I already made the decision that I'll be quitting. I want to start my own business or something else. I work as a project manager at the YWCA to empower young girls. I do training, and I love it. But it’s not sustainable for me to keep going on like this.
COVID has been a lot for everybody on top of everything else that we have to deal with. We should be allowed to take care of ourselves.