The transition from being an innocent, hopeful and glowing pregnant woman to one that’s stamped “high-risk” is not an easy one. Sometimes something urgent and scary happens that immediately flips that coin, and other times the change is like a slow-moving car driving towards a new state line. Regardless of how quickly the new reality emerges, women in this uncharted territory have an added and unwelcome layer of stress, worry and decision-making. Giving birth in general requires us to step into the unknown, but being high-risk means we take that step with a little or a lot of extra weight strapped to us.
With my second pregnancy, I became high-risk overnight when I woke up to blood at 26 weeks. It felt like a like I was in a movie, rushing to the emergency room at 2 a.m. with my husband behind the wheel and silent. I was shaken up, scared and then relieved to hear the beautiful thumping of my daughter’s heartbeat. Long story short, I was not only diagnosed with a complete placenta previa, which would require a Cesarean birth when the time came, but we later found that I also had a rare condition called vasa previa. It’s complicated, but where my baby’s cord was attached to my placenta made it so that if my water broke, my baby’s cord had a high likelihood of ripping open and we could lose her quickly thereafter (seconds) – and possibly me too if it wasn’t caught soon enough. That being said, I lived in the hospital for two months, close to the nurse’s station, near the OR in case I started bleeding or my water broke, or god forbid, both.
Living in the hospital for 60 days, away from my son and family, my home and my role in the world was a challenge not only because of the fear of imminent danger I went to bed with every night, but because being a high-risk patient required me to be my most strong, even when I wanted to fall apart.
There is no primer for how to be a high-risk pregnant woman. Many women who find themselves in this unwanted locale hand over their power to their care providers because the terrain seems too scary and unfamiliar. It makes sense – they desperately want to trust someone who can seemingly help them to keep their baby safe. But, these women often disengage from their own important knowing and their voice, which may actually make the whole experience more traumatic. And so, these shaken women need someone to gently whisper into their ear…
You are allowed to feel disappointed. Your feelings matter and expressing them is part of getting through the ordeal. This can be especially hard because most everyone around you may not know what to do with their own feelings, much less yours. Well-intending family and friends may gloss over what you’re going through to keep things light or they may ask you questions that make you even more scared. Sometimes you will feel steady and sometimes not. Try to find someone who can listen lovingly and deeply without giving advice, needing to fix things or patting you on the head. This may be a trusted friend, a doula or other birth person or an online connection. Because my diagnosis was so rare, I immediately hopped online and looked for some kind of a group of women who had gone through vasa previa (never found one), placenta previa or even hospitalization in general. I needed to have support from others who could speak my language and who would be familiar with my disappointment and emotions. And this spot-on article made the guidelines clear for my loved ones: comfort in, dump out.
Everything is not lost. Getting a high-risk label may make you feel like everything will have to be done in a specific, more medical way and there will be no room for the niceties that you wanted. This is not entirely true. With some creativity and forethought, there is a good chance you can sprinkle in some of the things that are most important to you. There will be some new things that must occur, but see how you can play with the ones that are still in your control, no matter how seemingly small they might be. Perhaps it’s adding some art to the beige walls you will be looking at for the next while if you’re hospitalized, maybe it’s immediate skin-to-skin contact or some soft music playing during your baby’s Cesarean birth or maybe it’s a mellow, intimate baby shower as opposed to a grand party.
You can say no. This is a tough one even for non high-risk mamas and it’s that much harder for high-riskers whose pregnancies feel so fragile. But it is true. You can say no to any procedure you don’t want to do. It probably won’t be without a fight, but after doing your research, talking it over with your care providers and sitting with it, if something does not seem necessary to you – or potentially poses a greater risk – you have the right to stand your ground and say no. My care providers wanted me to have an IV port in my hand for two months, just in case they needed it for an emergency. As much as I understood their point of view, ultimately I decided that my sanity trumped their need because I knew that if I was going to have to live in a hospital for two months and try to keep my wits about me, having an IV port in my hand as a constant reminder, annoyance and possible infection site was not going to help my cause. I knew it was a risk not having it. And I knew it was a risk having it. They kept asking and I kept saying no. Most of the time, nicely.
Keep the big picture in mind. Related to saying no, it’s can be hard to not get stuck in the trees of the experience and miss the forest view. With any recommended appointment, procedure, test or intervention, ask yourself, “How does this help my overall situation?” If something that is routinely done consistently gets in the way of your overall well being for no gain other than checking boxes on a paper, find your voice and speak up for yourself and your baby. For the first week I was in the hospital, residents would come in every single morning around 6:30 a.m. and wake me up to ask me if I had experienced any bleeding or contracting through the night. Needless to say, I was exhausted and a sign went up on the door shortly thereafter that read: “Dear Morning Residents, Please open my door quietly and if I’m sleeping, please let me be. If anything has changed overnight (bleeding, contractions, etc.), you will know because I either won’t be here or the nurses will tell you. My sleep is vital to my well-being. Please help me to stay well-rested and not start my long day any sooner than absolutely necessary. Thank you so much!”
Do regular stuff. The specifics of your high-riskiness may make it harder for you to partake in some of the usual tasks of preparation and celebration for birth and motherhood, such as baby clothes shopping, prenatal yoga or having your belly painted or casted. Again, get creative and find a way to make the most important ones happen for you. After your baby is born, you will treasure these moments of joyfulness and normalcy, even if they were few and far between. My thoughtful friend, Jen, hauled her daughter’s grown-out-of clothes all the way up to my hospital room and we went through it together, figuring out what I would use for my own daughter. Getting to partake in that ritual fed my soul in ways I cannot explain without tears.
No one knows what will happen – even your doctors. The daily rounds of a high-risk OB go something like this in each room, high-risk pregnant woman: “Doctor, do you think everything will be okay?” OB: “We don’t know, but here’s what we’ve seen and what is typical…” Being in this in-between place of not knowing – of planning for the worst and the best at the same time – is one of the hardest parts of the high-risk journey. It means that you rarely feel like you have a sturdy leg to stand on. You so badly want to know it will be okay and yet, no one knows. It’s maddening that all these people around you in white coats who you thought knew everything actually don’t know any more than you do about your future. So everyone must wait and see. There is no easy way to get through this part except to remember that you can and will keep going, breath by breath, step by step, week by week.
Nothing is being taken from you. I know this will be the hardest thing to hear, but I say it with the utmost love and understanding. I found the most peace during my experience when I realized that nothing was owed to me, that this baby in my womb was never promised to make it into my arms. I had assumed that would happen because from the moment we find out we’re pregnant, our minds play delicious mental videos of our belly growing, our birth happening and our baby smiling at us. It’s a beautiful and natural thing for a pregnant woman to do. And yet, just because we fantasize about and plan for those things to happen, it doesn’t mean they were ours yet. Which means they were never ours to be taken. All we have is this second right now, not a moment more.
When a pregnant woman becomes high-risk, much of the focus is spent on making sure that the baby and mother are as stable as possible, medically – and that’s a good thing. But, we cannot forget to acknowledge what is going on internally for these women, as they process their new status and tiptoe forward. The outcome of “healthy mom, healthy baby” is not the only important thing here. How a person feels and what they see and believe as they get from point A to point B is meaningful and has long-lasting effects. When your friend gets back from a once-in-a-lifetime trip to Italy, you don’t ask them, “Did you make it to Italy?” Instead, you ask them, “How was your flight? What did you think of Italy? What did you see while you were there? What were the people like? Did you try the pizza?” It’s the journey that’s remarkable, not just the landing.