"I was robbed" - Reflecting on Lilah's Birth on Her 1st Birthday
"She got to live, but it shouldn't have happened this way... I wish I had been told the importance of fetal movements and patterns. Why did I have to find out through internet searches at 36 weeks?" -- Lilah's mom, Kristen
A couple weeks ago, we received a touching message on our PUSH Instagram account from one of our followers, Kristen, mom to a beautiful baby girl named Lilah. It began:
"In March 2021, my daughter had stopped moving. I went in after a gut feeling something was probably not right..."
Too often, messages like these end in those nightmare words that no parent should ever hear: "...there was no heartbeat." But – thankfully – this story was different.
In Kristen's own words:
"It was the first time I had conceived. We waited until 12 weeks to tell anyone, I mean absolutely anyone. I had been in the best shape of my life, my pregnancy was smooth and although I didn't adore it, there were no issues that I knew of – I felt great. Every appointment checked out.
As a full-time architectural photographer, I was always on my feet and busy. Around 35 weeks, I started to question if Lilah was moving. Maybe she'd move a little bit and I was relieved.
When I look back, I absolutely think she must have been slowing down, but I will never forget my OB literally told me at one point in my pregnancy that she 'never felt either of her babies move.' That made me feel like any movement concerns were invalid.
Then, at 35 weeks + 6 days, I couldn't feel a thing. I panicked.
I googled fetal movements and what popped up was terrifying. My husband drove me to the hospital. Due to Covid, he had to wait outside L&D. Immediately, the nurses asked me questions and hooked me up for a non-stress test (NST).
I was inexperienced as this was my first pregnancy, so I quietly sat on the bed. The nurse squatted down and sighed that there was indeed a heartbeat. I assumed I was headed home, but what came after was very traumatic.
"She got to live, but it shouldn't have happened this way... I would never wish my experience on anyone." -- Lilah's Mom
My daughter, Lilah, was extremely sick inside of me. She was losing oxygen and blood flow rapidly, and ended up having hypoxia and in-utero strokes because the placenta was infected by chorioamnionitis [a bacterial infection that is potentially life-threatening for both mother and baby].
Within 1 hour of getting to the hospital, Lilah was delivered by emergency c-section and taken to the NICU. She never cried. Her blood sugar was depleted as she had used all her reserves trying to survive. I never saw her until hours later when she was intubated. I held her 5 days after her birth, which happened to be my 30th birthday. She stayed in the NICU for 18 days.
"Normal checkups weren't enough to detect her distress... My instincts quickly kicked in, but not without consequence." -- Lilah's Mom
I had zero symptoms besides the lack of movement. To this day they don't have an explanation for the chorioamnionitis. It's upsetting for me because I didn't do anything differently than your standard pregnant person, so it makes me feel like if I get pregnant again this could randomly happen again. I know I will be requesting a ton of testing just because of all the trauma.
I am so sad and hurt every day by the lack of testing and lack of education surrounding fetal movement.
"Women have a right to be educated regardless of how scary the information is. We need trustworthy providers, more testing, more than 5-minute check-ins. I was robbed of the normal first time mom experience." -- Lilah's Mom
I feel like it's my calling and duty to help educate and inform other pregnant women about fetal movements.
Even if you think you're exaggerating, go get it checked out. Time is precious, life is very fragile, and even the healthiest pregnancy can change. We don't have to live fearfully, but monitoring fetal movements and patterns is important."
Thanks to Kristen's quick thinking, today Lilah is celebrating her first birthday with cake and hugs and a frilly purple dress – the way she and her loving family deserve.
But 23,000 other families this year will not get that chance. Instead, they'll honor the beloved child they buried one year earlier by releasing butterflies or balloons, and crying far, far too many tears – though never enough to capture the true toll of their devastation, or the boundless depths of their love.
So in honor of her sweet girl on her 1st bday and the crucial lessons she learned about advocating for herself in pregnancy – lessons that 65 families every single day in the US were never given the chance to learn, until it was already too late – Kristen made a powerful video to share her experience with other parents and empower them to advocate, too. Watch it here.
Kristen, we are so incredibly proud of you for listening to your gut and taking action when you felt something was wrong, even though you'd unfairly been made to feel that those concerns weren't valid.
Thank you for speaking out to educate others that #MovementsMatter.
Thank you for alchemizing your trauma into change to reinforce how important it is to #KnowYourNormal, #CountTheKicks, #AlwaysAsk, and if necessary, #UseYourMomVoice! (We'd also throw in that it never hurts to #MeasureThePlacenta and #SideToSleep, either!)
And most importantly, thank you for sharing Lilah's story. We hope that the next time a worried parent is googling about reduced fetal movement, they will come across your words, and they will take the opportunity to act. Because #BabyKicksCount!
Remember: just like Kristen and Lilah, no one knows your baby or your body better than YOU!
Empowered Pregnancy Tip!
5 things you should do if you've noticed a change in your baby's fetal movements
For example, baby's kicks are slowing down or feeling weaker, or you've noticed a sudden, frantic/wild increase in movement, or anything at all that feels different!
DON'T WAIT! Go straight to the ER to get checked! (Yes, even if it's the middle of the night or you have an appointment in a few hours!)
Call your provider on the way to let them know why you're coming.
Request a non-stress test (NST), biophysical profile (BPP), and estimated placental volume measurement (EPV), in addition to any other tests your doctor recommends.
Listen to your instincts. Even if all the tests come back clear, don't go home if something doesn't feel right, even if you can't put into words what it is. Request to stay on the monitors longer until you feel reassured (overnight if you have to!) - and when you do go home, it's *always* okay to come right back!
Don't let ANYONE make you feel bad/hysterical/crazy for speaking up - you are a PARENT and this is what parents do! It's your medical provider's job to care for you and your baby, and your job to advocate for your child.
Deep breaths, don't panic. There's a 99% chance that everything will be just fine. (And even if it is, you *still* did the right thing! We promise, you'll NEVER regret advocating for your baby.)
There is no set standard for "normal" fetal movement ("10 kicks in 2 hours" is outdated!) because every baby and every pregnancy is different. That's why it's so important in EVERY pregnancy to get to #KnowYourNormal and take time to bond with your baby through a daily kick count (try the free Count the Kicks app!) plus awareness of your baby's usual patterns, frequency/timing, and strength.
Fetal movement tracking at home is not only a great way to get to know your baby before birth, it will also empower you to quickly notice any changes and act!
You've got this, parents! Learn more free, evidence-based pregnancy tips here.