“This is baby’s life, my family’s life. This is our future.”
Amanda’s story is unique, of course. It’s also universal, this story of a mother who needed answers and endeavored to find them.
And her message to every expectant mom, simple yet profound, should be emblazoned on t-shirts, billboards, mountaintops.
In her own words, this is Amanda’s journey:
I have a history of two normal labors and deliveries, but not the best experience afterwards. Both times I had retained placenta (when the placenta is not expelled from the uterus following delivery, which leaves the mother susceptible to infection and extreme blood loss). For my third pregnancy, at twenty weeks, I went to my provider and, following a scan, they told me I had placenta previa, a condition where the placenta attaches low in the uterus and partially or completely covers the cervix, potentially causing severe bleeding in the mother before, during or after delivery and leads to a c-section. The provider just said it was common and normally resolves by delivery. We were just grateful everything was fine with the baby at the time and didn’t fully process the ‘placenta previa.’
Of course, at home I looked up placenta previa. I found there were different types of placenta previa— marginal (partially covering the cervix) or complete (fully covering the cervix)—and that distinction mattered. Marginal placenta previa resolved itself in about 90% of the cases, but with complete previa, there was more risk of significant premature bleeding and a necessary c-section. In my research, it seemed other providers gave patients measurements of how much it was covering the cervix and restrictions to try and prevent maternal bleeding.
I called my provider back.
“We’re not sure, but we’ll have you back in the third trimester and check it again. Really not a concern.”
This is where I had a gut feeling to get a second opinion.
Back in 2021, I had a miscarriage, and my previous OB provider had retired. Dr. Swift, although 45 minutes from where I lived, was the only OB I found willing to fit me into her schedule and helped me through that difficult time. So that was my connection to her, and while I hadn’t seen her since (I wanted a provider closer to home), I scheduled an appointment with her at 24 weeks for a second opinion. I was really just wanting ‘piece of mind’ to see if the placenta had started to move and there was less chance of bleeding, but she came in after the ultrasound with more than I wanted or expected to hear.
Along with stating the placenta previa was definitely ‘complete,’ she said it looked ‘spicy and membrany’ and alerted me to the possibility I might develop a rare condition called ‘vasa previa.’ This means the baby’s (fetal) vessels go over the cervix and can lead to severe fetal blood loss and she told me I might end up losing my uterus because of what she termed a “sticky placenta.”
Swift said be ready for a 36-week baby and potentially the loss of my uterus.
Okay, let’s just say I was kind of upset and shocked with the news. I was just expecting confirmation of the placenta previa and had hoped it had already started moving. I had never heard of ‘vasa previa’ before and I didn’t know that my placenta sticking to the uterus was even a possibility.
As it would turn out, unfortunately, Dr. Swift was correct. I actually had a bi-lobed placenta, meaning I had two placentas, the main posterior one (and the only one identified on the 20-week ultrasound) and a secondary anterior accessory lobe. Between those two placentas there’s a membrane of baby’s blood vessels over the cervix that wasn’t protected by placenta—Type 2 vasa previa.
What that means is if you go into labor (cervix dilating, water breaks, contractions) or strain too much, the vessels rupture and hemorrhage and the baby can bleed out in less than 10 minutes, causing death or brain damage.
I was in denial, upset and frustrated that the other doctor hadn’t told me that. I was overwhelmed and anxious and had no idea what questions to ask at the time.
I didn’t think I wanted to see Dr. Swift anymore. I was hopeful she was mistaken, the original provider correct.
So, I went back to my original provider and after a couple more scans, they confirmed what Swift had said. I mean, they confirmed it technically, but as far as I’m concerned Swift gets credit for the diagnosis. Without her intervention, no one would have known about it yet. That’s the scary thing: my provider originally said they weren’t going to recheck the placenta until 32 weeks and in my research, many times the exposed vessel isn’t seen that late in the pregnancy as the baby's head is in the way. If this diagnosis was missed, it could have been devastating to baby.
As much as I didn’t want to believe Dr. Swift, she ended up saving our baby.
My original provider referred me to the maternal fetal medicine (MFM) specialists. They re-confirmed and said I’d be hospitalized between 28-32 weeks, with a goal of a c-section at 34 weeks (the reason for inpatient hospitalization is in case of premature rupture of the membranes and fetal vessels, the only chance of baby survival is to be close to an operating room).
I was still processing: How do I go from originally just placenta previa and a 90% chance of any issues resolving themselves to a worst-case scenario of being hospitalized and having a c-section after four weeks of being inpatient? I was still in denial and had two other kids at home to take care of.
I got the feeling from my providers that this was rare and scary, even for them. My anxiety intensified after seeing this MFM knowing I’d have a NICU baby at 34 weeks. I was grateful baby was healthy but felt so bad baby would be forced out so early and wanted to see if there were other options.
This is baby’s life, my family’s life. This is our future. If I start bleeding or go into premature labor, will baby die? That would be devastating, and on my conscience—forever. If baby is born so early and survives, will baby have health issues or learning disabilities?
I really needed a provider that was confident and that I could trust. So, I thought I’d take steps to make that so. I’m very much an advocate for myself and just wanted to make sure that I was seeing the right doctor and that this rare complication was being treated properly. After the diagnosis was confirmed, I was up late every night for weeks doing my own research.
And here’s what I found: older research confirmed that the 28-32 inpatient and 34-week delivery was indeed the recommended timeline. But I looked at every scientific article I could find and discovered that newer research suggested a different timeline was plausible, one that got you to 36 weeks or more.
Finding those studies was one thing, interpreting them another.
I decided to reach out to the authors of these scholarly papers I had researched to understand my situation better. What’s the worst thing that can happen? They don’t respond?
Guess what? I talked with a maternal fetal medicine doctor from one of the Harvard hospitals in Boston, a leader in the field. He called me on a Sunday evening and we talked for an hour and a half and went over all his research and advice. Another expert was from Houston; he got in touch with me late at night after he was done seeing patients. Yet another MFM from Chicago called me on a Saturday afternoon!
The expert doctors doing the research for this are so passionate, and so generous, and it made such a difference in my anxiety to be informed.
I had a gut feeling about this, and followed it through. I guess this is one of the main messages I want people to take from my story: when you have that gut feeling, listen to your instincts, always listen to your intuition, because it will serve you well. If I would have ignored it, our outcome would have been very different.
The expert from Boston actually came out of retirement to research vasa previa more, because many babies are being born too prematurely unnecessarily since so many providers are scared of this condition. If vasa previa goes undiagnosed, that’s the worst-case scenario. I learned that a high percentage of situations where you go into labor at home or your water breaks will result in the death of baby. If it’s diagnosed, there’s a very high chance that baby will be fine. He wanted to spread the research that patients can make it further and can get to 36 or 37 weeks safely in uncomplicated cases.
He gave me comfort, telling me now that I had been diagnosed (thank you Dr. Swift), the hard part was done. I just needed to find the right provider.
Long story short, I went back to the original provider and maternal fetal medicine specialists, and they were going off the older data of early hospitalization and delivery at 34 weeks. They weren’t receptive to the new data and said we should just get baby out and let NICU take over. There’s a big difference in a baby born at 34 weeks needing NICU vs 36 weeks (if I could make it that far). I felt like a number, being treated from a page in a textbook from twenty years ago. I was nervous to go “inpatient’ under this provider because I knew I wouldn’t be in control and didn’t trust them to deliver baby even earlier. I’m sure they had the best intentions at heart. Maybe it was just me, being a difficult patient. I didn't want to make anybody uncomfortable. I just wanted to find a provider that was more confident and that I could trust to be in control of mine and baby’s lives.
At 28 weeks, I had a bleeding episode after going for a walk and playing with my toddler. On the way to the hospital I was so scared that they’d deliver baby unnecessarily or keep me there until delivery that I had my husband pull over at a gas station to use the bathroom and the bleeding had stopped and baby was kicking (the bleeding was from the placental and not fetal vessels). I do not recommend this—in hindsight this was very risky and I was lucky. This made me realize the reality and danger of the situation. My anxiety about bleeding and losing the baby after this episode was pretty bad. I was grateful for the distraction of work and my other kids and thankful for the help of grandparents!
My gut, once again, was telling me something, namely that I shouldn’t be going back to my original providers.
The next day I scheduled appointments with MFM doctors in Madison and Milwaukee to see if they were up to date on the latest research. I figured a month away from home being inpatient was a short amount of time in the grand scheme of things to travel further if it meant a healthy baby.
As part of my research, I joined an international Facebook group on vasa previa and asked a question: ‘Anyone in Wisconsin have this, and where did you go?’ And there was somebody who delivered at Women’s Care at 37 weeks, and she happened to have Dr. Reed. 37 weeks!!
I called Women’s Care to make an appointment with Dr. Swift again, but because of needing to get in asap and her being booked, I got to see Dr. Reed.
I actually didn’t tell Dr. Reed anything about my research. She came in prepared with all of my previous history and was up to date on all the latest research for vasa without me even saying anything. She thought we could aim for 36/37 week delivery and 34/35 week inpatient as long as there were no complications. I asked her all the questions I had after doing my research and all of her answers followed the most recent data. She said we didn’t even need to see MFM. I was impressed!
Finally! I felt instant relief. I knew Women’s Care and ThedaCare-Neenah was where baby and I needed to be.
I switched to Dr. Swift since she had made the original diagnosis. She agreed with Dr. Reed that I could go to 36-37 weeks and was also up to date on the latest research. She treated me like a person and looked at my clinical situation and not just a textbook. At one of my appointments while I was hooked up to the contraction and fetal monitor, she came in and spent her entire lunch with me, and I know she’s a busy lady. The first thing Dr. Swift asked me was about my mental state.
‘How are you feeling?’ she asked.
No one had ever asked me that before.
She was very informative and treated me like a friend. She cared about making the best possible decisions together for my situation. I knew I could trust her and that she had mine and baby’s best interest in mind and I could just sense her confidence when she told me not to worry, that it would be okay (I know that’s not always true but still comforting).
I also saw Dr. Vandenberg a few times during my hospital stay as well as other providers and I can tell you without hesitation: Women’s Care doctors are in a different league. Their compassion. Their confidence. Their knowledge. Their bedside manner. I wish all patients could experience this level of care.
I went inpatient at ThedaCare-Neenah at 33 weeks and 4 days, a little earlier just because I was anxious with previous providers wanting to admit earlier and I'd have a hard time forgiving myself if something happened at home. I was monitored three times a day with NST testing (fetal and contraction monitors). Baby gave us a few heart rate scares and had contractions daily, but the doctors always remained calm and encouraging.
I forgot to mention I’m a big wimp with blood draws and IVs, so I was terrified of being cut open for a c- section. Again, Dr. Swift and the nurses were amazing and encouraging that everything would be okay and always went above and beyond to explain things and ease my mind. Dr. Swift stopped in daily to check on me and chat. Not only did I appreciate her as a well-educated doctor, but also as an incredible person being a friend to me in the hospital.
I was at the hospital for 3 weeks. Living on the Labor and Delivery floor I got to witness, firsthand, top notch doctors and nurses that truly care. Our precious little vasa previa survivor, Thomas James, was delivered June 12, 36 weeks plus one day. Dr. Swift and I picked this goal date and we made it!
Seven pounds, 14 ounces. A month early and no NICU time. Relief, grateful, exhausted—so many emotions. All the research and anxiety was worth it.
After months of worry I felt oddly as calm as possible for the surgery. I was able to put all my faith in Dr. Swift and knew that I had chosen the best provider for us. The delivery had its moments. After I got the spinal, my blood pressure went down and that affected baby, but Dr. Swift was very quick at getting him out. My placenta was indeed sticking to the uterus (something termed accreta). She warned me ahead of time she may need to take my uterus and do a hysterectomy to prevent major hemorrhaging, but she was able to get it out at the last second and save my uterus and a blood transfusion. Dr. Swift communicated exactly what she was doing and she and her team kept me calm and informed the entire time.
I did ask doctor to take photos of my placenta and after seeing the multiple large exposed fetal vessels was humbled by how lucky we were and that Dr. Swift caught this problem. Dr. Swift is an amazingly talented surgeon. I was always confident she had everything under control. And she was fast!
I feel like she saved my baby, saved my fertility, saved us NICU time, and helped get me through a long hospital stay. Without her diagnosis and care, my sweet little baby boy, Thomas, may not be here today.
She saved us both.
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