I’ve been absent from this space for a while as I’ve recognized that there is a lot to say that I have not said and am afraid to say. There’s a story to tell that hides in the privacy of my mind that I think I’m ready to share. It’s the story of my daughter’s birth and her diagnosis of hearing loss. Seems simple enough, but it’s a story filled with my fears and uncertainties that belie the strong and confident mask I wear. Here goes:
It was a beautiful Tuesday in a March that was far warmer than it should have been. I was anxious to pick up some last-minute items that I had convinced myself I needed before the baby was born. It was a long walk for someone 8 1/2 months pregnant, with an extra 50 lbs of baby, water and who know what else-weight. But the sun was so warm on my face…. So my mom and I headed out for our walk, determined to talk our time. I remember us laughing a lot. It was that kind of day when its hard to hold onto a negative thought and laughter comes easily.
By the afternoon when we had picked up my son from daycare, I had begun to notice that the baby wasn’t moving as much as usual. We were sitting in the park and a dark cloud of thought passed through my mind. I quickly dismissed it and told myself that the baby was probably sleeping while I walked and that in the evening, when I would be resting on the couch the babe would show off some moves. My husband was going out for dinner with some work friends, so I would have a quiet evening to rub my belly and dream blissful baby thoughts while the babe bounced around.
It started with my son getting to bed late. When I finally flopped down on the couch and turned on my phone, there was a message from his daycare provider that a child at the daycare had lice. Great. Well he wouldn’t be going to daycare the next day, keep him home with me — extra cuddles would be good anyway. Upstairs to check his hair for lice (while he was still sleeping) and gather all clothes and bedding to be washed. Then research non-toxic lice treatments for pregnant women. I’m an avid gardener so the bottle of neem oil under the kitchen sink would come in handy as a shampoo. Finally at 10:30pm I crawl into bed. And realize that I can’t remember the last time I felt the baby move. So I roll onto my left-hand side, calm my breathing and place my hand over my belly. As the minutes tick by it gets harder to control my breathing.
We don’t tend to keep pop or much juice in the house but I found something slightly sweet and slightly fizzy to try to get the baby moving. I felt some slight movements — much slighter than what this baby usually treated be too. This was a baby who danced around like a team of synchronized swimmers when I had the stomach flu and hadn’t eaten all day. My husband came home around midnight, and although he wasn’t drunk, he had the usual couple of glasses of wine with dinner and passed out before he could detect the full extent of my anxiety. I called my midwife, whose beautiful, calming voice helped be to find my breath and decide on a plan. I would have something to eat and something sugary to raise my blood sugar. I would call her at 2am to tell her how many movements I’d had.
Three. Three distinct movements and a couple flutters that I wasn’t sure about. Six would have been better. But by 2am I was so tired I just wanted to sleep. And I didn’t want to be a bother. Would I go to the hospital alone? No, not a good plan and one that the love of my life would certainly disagree with. And what about my son? Wake him up to take him to the hospital? No. Wake up my parents to come down and stay with him? Maybe, but they have _____ and ______ and ______ tomorrow, so no. I told midwife, let’s wait and see where we are in the morning; let me get some sleep, calm down, maybe I’m over thinking; I’m sure I’m over thinking.
I don’t remember sleeping or waking up. I remember standing in the shower crying. Hard. And talking to the baby about all the hugs and kisses that I couldn’t wait to share and please be ok please move for mama and you’re scaring me I’m scared.
And I knew I had to go to the hospital. And midwives knew and my husband knew. We dropped my son off with his daycare provider who would be operating out of the library that day. My mom would pick him up later. But at this point we had convinced ourselves that we were just going in to hear the baby’s heartbeat — just for reassurance. In and out, probably time to enjoy the rest of the summer-like day in March.
When we got to the hospital my midwives were waiting for me and hooked me up to the fetal monitor right away. We got that instant reassurance of hearing our baby’s heartbeat. But we very quickly noticed a strange heart pattern. The baby’s heart would stay steady at about 130 beats for a few minutes, then it would suddenly drop dramatically and I would get nauseous for a few seconds, then the heart beat would go back up to a flat 130. Usually a baby’s heart beat fluctuates a bit but stays within the 120-160 range (ish). My midwives determined that we should do an ultrasound to get a better picture of what was going on with the baby. I asked what the process would be and what was the worst case scenario. Maybe its time for the baby to come out, maybe induction, definitely not a c-section. We needed the on-call OB to sign off on the ultrasound and I was reassured that this was an OB who preferred for baby’s to be born when they were ready, she was not an OB who jumped at the chance to induce women or to perform c-sections. She came in, listened to my midwives’ accounting of the last 12 hours and looked at the print out from the fetal monitor. Then she said, “this baby needs to come out right away, we need to do a c-section”. Nobody said anything. It was that kind of atmosphere where you think the speaker might be joking but no one is really sure so no one laughs. With absolutely no reaction she continued, “I’m sorry but I had a baby with this same heart pattern 2 weeks ago and that baby didn’t make it, we need to get this baby out now”.
My heart sank, I started crying and a whirlwind began around me. The OB hugged me (which was apparently completely out of character) and then got the nursing team into action. I was being undressed while I was signing forms and having an IV inserted into my arm while everyone was talking. My husband and I were crying and the look of fear in his eyes scared the crap out of me. He is my rock that never wavers, but that day he shook. They ran me down to the operating room, just like you see on all those medical dramas. Once there, the anesthesiologist had to try to get an epidural in my spine while I was lying down because the baby’s heartbeat would fall every time I sat up. It was taking a long time and the doctor’s were getting upset with each other for how long it was taking so they finally had me sit up to just get it done already. As soon as I was lying down they started the c-section, which had the anesthesiologist pissed off again because they weren’t really giving the drugs much time to take effect. They did take effect. My amazing midwife was by my side the entire time, talking me through in the most calming voice I have ever hear. She told me everything that was happening and was going to happen which helped to centre me. For the most part it felt like I wasn’t really there – like I was detached from my body someone. I no longer had any control over my body. This procedure needed to be done to save my baby so the doctors took over in deciding what was going to happen to be and how it would happen. The drugs took away my mobility but it didn’t even matter, other people were making all decisions pertaining to my body and I wanted them to because I didn’t know what else to do to help my baby.
It’s a girl and she’s small, very small. And she cried and my world settled again. There was meconium in the placenta and they needed to get it out of her system as soon as possible. They took her out of the room to work on her before I got a chance to she her. Not even a glimpse. But she was ok and she was going to be ok, so I could breath again.
I had been planning a home birth. I was going to give birth to my baby in the comfort of my home, in the comfort of my own bed. I would relish in the labour and let it takes it course, trusting my body to deliver my baby to my arms. As I lay in the recovery room I felt so alone. The baby who had been inside of me for almost 9 months until just a few moments ago, was now somewhere in a hospital – I didn’t even know where – and other people’s hands were on her. My hands were empty. The nurses came, the midwives came and they all talked about their baby’s who had also be 5 lbs – reassuring me that my 5 lb baby would be fine. My husband stayed with our little girl until he knew that she was ok, then he brought me a picture of her. Despite all of the tubes covering her body I could see that she looked exactly as her older brother had looked when he was born. She sure was tiny, but she had a look of determination on her face that I recognize in her now almost 12 month old body. They called her “The Fighter” in the NICU because she screamed and railed at every procedure they performed on her. Already making me a proud mama. When I finally got to see her, 7 hours later, I couldn’t touch her — her heart and lungs hadn’t stabilized yet and her system was too sensitive to have any additional stimulation. But I already told you that she is a fighter. She proved more than one NICU nurse wrong and was out of the incubator the morning of Day 3, in my room and actively breastfeeding the night of Day 3 and in her going home on Day 4.
I’ll never really know if the decision to stay home that night was the right decision. My midwives and my family all believe that if I had gone into the hospital in the middle of the night, that the on-call OB may have made very different decisions that would have affected the outcome of my daughter’s birth. Maybe they’re right. Knowing now that something was going wrong for my baby, its hard to forgive myself for making the decision to stay home. One of my midwives spoke with the OB who delivered my baby the next week. My midwife hadn’t seen a snap decision like that, based on that kind of heart patter, made before. The OB admitted that if I had gone into the hospital 3 weeks earlier she probably would have sent me home. But 2 weeks ago a baby died. That baby had been exposed to meconium for too long. I say thank you to that baby everyday for its role in saving my baby. My heart aches for the mother who lost her child and it’s from her loss that I not only hold my daughter closer to me but also forgive myself for not going to the hospital when I first suspected that something was wrong.
We’ll also never know what really caused my daughter’s hearing loss. But with no family history of hearing loss and a healthy pregnancy, we might be able to make an educated guess that a lack of oxygen to the ears during her birth may have caused her hearing loss. I sometimes wonder if I had gone to the hospital sooner, if they had taken her out sooner, would her hearing have been affected? Maybe she wouldn’t have needed to be on oxygen or in an incubator for two days. Maybe – but we’ll never know. So I’m trying to put the maybes to rest and forgive myself for something that probably isn’t even my fault. I know I shouldn’t try to find someone to blame for my daughter’s hearing loss, but when we don’t have answers to a question we try to search for them. Blaming myself for not going to the hospital sooner is my way of trying to find an answer. But as I forgive myself for that decision I find that I am also able to find peace in not knowing all the answers that pertain to her hearing loss. As my family rounds out this first year of having this amazingly tenacious girl in our lives, we also begin to get used to and to accept how this child’s hearing loss has reshaped our lives. I look forward to when she can tell me what she hears, what she has difficulty hearing and how I can help to make different environments easier for her to hear in. And I accept that until then, and even then, there is so much that I have no control over.