Three years ago, I gave birth to twins when I was only 25 weeks pregnant, and it was about as awful as it sounds. We spent almost four months in the NICU and had to endure all sorts of things I couldn’t have ever possibly anticipated when I first peed on that stick. It was rough — so rough — but when my husband and I finally got to bring our tiny babies home from the hospital, we were finally began to breathe again.
Crisis averted, we thought.
Back then, I probably would have assumed that by the time my little twins became energetic, sassy 3-year-olds, I’d be over the “preemie mom” thing. That whole chapter would be behind me; I’d just be a “normal mom,” thinking “normal mom thoughts.” But even though my children’s prematurity doesn’t affect our daily lives anymore in a major way (my daughter has mild cerebral palsy, but my son has no lingering issues), I’m still a preemie mom, through and through. And sometimes I think that’s hard for anyone who hasn’t had a preemie to truly understand.
The truth is, there are a number of things about being the parent of a premature baby that stay with you far longer than you’d ever have imagined. And some of those things change everything about who you are as parent, in ways you could never expect.
1. You never forget what you went through.
Anytime there’s a premature birth or a NICU scene on Grey’s Anatomy, I have to turn it off immediately and distract myself. It’s been a long time since I was the one in the OR giving birth to teeny tiny babies, but seeing it played out on TV makes it feel like it might as well have happened yesterday.
The blessing and the curse of preemie parenting is that I remember all of it — all the tiny details of my children’s entrance into the world are forever imprinted in my brain. For most parents, that would be a good thing, because, for most parents, the day they gave birth was a happy one. But for preemie parents, those memories are a mix of all sorts of different emotions: happy, sad, terrified, in love, overwhelmed. It still feels vivid and real. And we still carry it around with us every day of our lives.
2. The thought of having more children is terrifying.
Lots of preemie moms go on to have more children, and many of them have perfectly healthy, often-full-term pregnancies, which is amazing and wonderful in every way. But making the decision to go ahead and take the chance? Not so easy. When many of us were were pregnant with our preemies, we were blissfully ignorant about the scary, awful world of pregnancy complications. Most pregnant women are, after all — and honestly, that’s how it should be. But one of the reasons I don’t know if I’ll ever have another child is because I now know that something could go wrong at any point. And I know it because it’s already happened to me.
3. Everyone has an opinion.
Making the decision to try for another baby is difficult, but if you’ve gone ahead and done so, you’ll probably find that not everyone is going to be supportive or understanding. After her second child was born at 25 weeks, Ellen, 36, wasn’t sure if she’d have more children. But a few years later, she got pregnant again, with a son named Theo who was born healthy and full-term. Despite her happy ending, she said that those around her reacted differently to the news of her third pregnancy than they did with her second.
She tells Babble:
“[When you’ve had a preemie,] every future reproductive decision you make gets judged. Some people think you are crazy if you try again. Other people wonder what the big deal is and don’t understand what you have to worry about, or they might push you to have another if you only have one, even if you’re scared. A lot of people don’t get how fraught and stressful that decision really is.”
While my own husband and I haven’t definitively closed the baby-making chapter of our lives, being a mom of two extremely premature children has meant we’ve heard all kinds of commentary: that we shouldn’t dare try again; that “it’ll be fine” to have another; that we already have two children, so why would we possibly need to have more?
4. It’s hard to be around pregnant women — even if that pregnant woman is a good friend.
If you’re a pregnant woman with a preemie mom friend, please know this: If she’s acting weird about it, it has absolutely nothing to do with you. She’s happy for you. She wants you to have the best pregnancy ever. She thinks you’ll be an amazing mom and hopes that every moment of your pregnancy is joy and sunshine and rainbows. But she might be sad for herself — for everything that she never got. And sometimes, there’s just no way of working around that.
I still find it hard to be around pregnant women. I am jealous of pregnant women I see on the street. When I see yet another happy Facebook pregnancy announcement on my news feed, I get a knot in my stomach. And when a sweet friend of mine recently posted a photo of herself further along in her own twin pregnancy than I ever got with mine, I cried my eyes out. I am happy for her — so honestly happy — but, for now at least, the happiness and sadness has to coexist. It’s not personal.
5. You’d kill for a pregnancy do-over, even if you don’t want more kids.
Some days, I feel like I might want to have a baby again. Other days, I’m pretty happy quitting while we’re ahead. But one thing that’s constant? There’s nothing I’d want more than a chance to be pregnant again with Madeleine and Reid.
Since I didn’t even make it to my third trimester, I feel like I missed out on a lot of my pregnancy (because, uh, I kind of did). I’d only started to feel movement at 21 weeks, and I can barely even remember what that felt like now. The giant twin preggo belly I’d envisioned didn’t get very big at all. Aside from some killer morning sickness, I didn’t really feel pregnant at all. I know that a lot of women are totally over being pregnant by the time they approach their due dates, and I probably would have been too if things had gone differently. But now, the idea of being heavily pregnant and uncomfortable with two large, active babies inside my body sounds like actual heaven. And I wish so badly that I could go back and do it again.
6. It still hurts to think about, even when your children are thriving.
Thanks to huge medical advances in neonatal medicine, many premature babies (sometimes as early as 22 or 23 weeks) are not only living, but going on to have wonderful, meaningful, amazing lives. Even in the years since my own daughter was born, a number of changes have already been made in the best care practices for micropreemies that may have prevented the brain hemorrhage she suffered at birth, and even possibly the treatment she received, potentially allowing her to avoid the two invasive surgeries she had and the permanent VP shunt she now has in her head. This is a really, really good thing: it means that a lot of parents get to watch their children grow and thrive with much better outcomes than years past. But it also means that their children look “fine” to outsiders, and that can lead to a lot of misunderstanding about the invisible toll preemie parenting has on parents.
Shannon, 30, is the mother of a now-18-month-old daughter born at 26 weeks. While those around her were empathetic at first, she says it’s become difficult for people to understand the impact her daughter’s prematurity continues to have on her now that she doesn’t look or seem any different from other children her age.
“I think the biggest thing for me is the lack of understanding from family and friends about how much my mental health was affected,” she tells Babble. “Just because Ellie has been home for over a year and is thriving does not mean that there is not mean that it’s easy to move past what we went through.”
7. You never truly stop worrying about another potential health emergency.
I’d like to think I’m a pretty laid-back mom. Since we’ve experienced things like pre-term labor, long hospital stays, brain surgeries, and some developmental delays, the little things that probably would have stressed me out about motherhood had my kids been born totally healthy don’t rile me as much. But one thing that gets to me much more than it should? Doctor’s appointments.
Even when the twins are totally fine and we’re going only for a routine checkup, medical appointments put me completely on edge. I’m worried about what they might find. I’m worried about not seeing something that has been there all along. And I’m going into those appointments knowing that, even if my children are doing well, there are a million possible other health emergencies not related to prematurity that could pop up in their lives at any point. They could get a disease. A tumor. Some kind of awful infection. I didn’t even realize my daughter had cerebral palsy until she was diagnosed with it this year and it hit me like a giant slap in the face.
That fear fills my head with “what ifs.” What if she falls and hits her head when she begins kindergarten in the fall, and she needs another surgery? This summer she will head back into hospital for her yearly, routine head MRI — what if she has an unexpected reaction to being put under anesthesia? Or what if they find something on the scan they never expected to see that would change our lives forever?
The question marks that remain from having a child who was once medically-fragile are daunting. And while they are surely nothing compared to the reality that parents with currently-sick or disabled children face on the regular, they’re still hard to reconcile. The hard part is that from the outside, no one would know just how dark my thoughts can sometimes get about all of the terrible things that could conceivably happen to my children. And that means, sometimes, it’s really easy to feel totally alone.
Being a preemie parent has changed my life in all sorts of ways, and not all of them are negative. Seeing my two formerly-tiny babies who didn’t even weigh two pounds each turn into happy, funny, rambunctious little people has been profound, and what we went through taught me to appreciate motherhood more than I probably would have been able to had nothing gone wrong. And I also know how lucky I am that they are here, that I get to be their mother, because I know that not all parents whose babies were born early have had the chance to do that.
Sometimes though, even being a “lucky” preemie mom can be hard. Unless you’ve been there, the reality of having a child born premature can be impossible to fully understand, and that can be more of a challenge than any of us ever anticipated.