“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.
Photography by Erika Krause