I spontaneously ruptured at 16 weeks,
though we didn’t discovered the
rupture until our regular ultrasound
at 19 weeks. I had occasional leaking,
which we and our doctors assumed was
simply incontinence. We had almost no
amniotic fluid which could be due to
genetic defects, kidney problems, or a
rupture. We scheduled an amnioinfusion
to confirm ruptured membranes.
Fortunately, our specialist (Dr. Frank
Craparo at Abington Memorial Hospital
in Abington, PA) is one of few who
perform the amnioinfusion. He injected
dyed fluid into the uterus using a
long needle inserted through the
abdomen (opposite of an
amniocentesis). If the dyed fluid
leaks out, it confirms the PPROM
diagnosis. Doing an ultrasound with
the fluid in place also provided a
much better picture – we could tell
that our baby looked fine anatomically
(including kidneys and a full
bladder), that we didn’t appear to
have any early visible complications
from the oligohydramnios/anhydramnios
(low fluid/lack of fluid, both of
which described our diagnoses at
various times). We were also able to
tell our child was a boy.
In cases of spontaneous rupture as
early as ours, the options were very
limited and the prognosis is dire. The
likelihood of labor onset and risk of
infection make even reaching viability
unlikely. If we did get there, the
regular risks of prematurity were
increased by the likelihood of
developing pulmonary hypoplasia (lack
of lung development). In the meantime,
we’d be risking my health and even my
life with the possibility of
infection. Spontaneous “resealing” is
always a possibility, but is uncommon.
We basically were going to have three
choices: pursue treatment, wait and
see, or terminate. Termination is a
very common course of action in cases
such as these, and historically
termination was the standard of care.
We weren’t automatically opposed to
termination, but preferred to explore
the other two options before making a
final decision.
One of the treatment options was
serial amnioinfusion. Fluid is added
every 3-7 days to maintain fluid
levels. Among other requirements, the
rupture has to be small enough to
retain sufficient fluid during that
interim period. I was not a candidate
for Dr.Craparo's serial amnioinfusion
protocol as my membrane was so
ruptured that almost all the fluid
leaked out by the conclusion of our
discussion. Dr. Craparo also described
the amniopatch you’ll read about
online in addition to an amnioplug
procedure performed by Dr.Sciscione at
Christiana Hospital in Wilmington, DE.
This procedure involves sealing the
cervix and allowing the amniotic fluid
to build up in the womb. We met with
Dr. Sciscione but opted against this
as the risk of “sealing in” a
subclinical infection is not well
understood and the effectiveness of
the procedure is greatest when
performed immediately after rupture
(within several days). In other words,
there was a significant but unknowable
risk for almost no upside in our
situation. We went to Johns Hopkins
for a second diagnosis and
consultation, which confirmed what
we’d learned earlier. Most treatment
options are for PPROM cases resulting
from amniocentesis. We also talked to
several doctors who
practice “expectant management” for
patients opting not to terminate.
Under expectant management, both
mother and baby are frequently
monitored with particular vigilance on
the mother’s health, especially in
watching for signs of infection. At
the first sign of infection (fever,
discharge, tenderness), the baby is
delivered no matter the gestational
age. Normally, expectant management
takes place in the hospital – the
mother is admitted for the duration of
the pregnancy.
As we explored treatment options, we
were approaching Pennsylvania’s legal
deadline for termination (without an
exemption for health of the mother).
It was an excruciating decision for
us. We were terrified of forcing him
into a life of pain and suffering
(whether short or long) and of risking
my health and life for such a slim
chance of a good outcome, but
alternately of having to look back and
live with what might have happened
otherwise. There was also always the
possibility of a spontaneous healing
or a spontaneous miscarriage taking
the decision out of our hands. Our
heads told us that the safe and smart
thing to do was terminate. Our hearts
told us that we wanted to know we’d
given our son every chance to survive,
and that we should (to an extent) let
nature run her course. We ultimately
went with our hearts and opted for
expectant management. This was just
before 24 weeks.
I had been on home bedrest since the
diagnosis, and we continued our
program of weekly doctor visits and
proactive anti-infection measures
(gallon of water a day, temps every
few hours, super hygiene, no sex,
light activity to preserve strength).
We also rented a Doppler heart rate
monitor (like those used in the
doctor's office) to track fetal heart
rate a few times a day. We did two
courses of steroids, one at 24 and one
at 27 weeks. We never did a course of
antibiotics. Our doctors saw no
benefit, since we’d discovered the
rupture after several weeks had passed
and they’re only proven to be
effective when given immediately after
rupture.
At 27 weeks I entered the hospital We
had reached a point where our son was
not only officially viable but where
an early intervention detected through
constant monitoring could potentially
improve our outcome. In the hospital,
I was on continuous fetal heart rate
monitoring and we did an ultrasound
every day. My amniotic fluid levels
were normally around 1 or 2 cm. His
heartrate never dipped or accelerated
outside acceptable levels (90-180 bpm)
even while in labor. I never bled and
didn't have contractions until the day
I delivered. We had a number of
conversations about method and timing
of delivery. In the end, we
collectively decided to induce and
attempt to deliver vaginally at 34
weeks. If he went into distress, or
presented with standard indications
calling for a C-Section, we’d go that
route instead. Delivering at 34 weeks
in these cases was the standard of
care in our team, as his is the point
where prematurity risks recede and
become are outweighed by the risk of
infection. Getting through hospital
bedrest with continuous monitoring,
was the most difficult thing I’ve ever
had to do. I was able to get up to use
the bathroom and shower once (or
twice) a day, and got to leave the
room only to visit the ultrasound
center. It’s impossible to get long
periods of sleep - when he moved, the
nurses had to come in and adjust the
monitor, unavoidably waking me up. It
was the worst part of the entire
ordeal.
We didn’t have to wait until 34 weeks –
our son Marcus came on his own at 32
weeks and 3 days. I had back labor
slow building through the day, peaking
at night. When we got to labor and
delivery, he came quickly and with no
complications. The best part of the
entire experience was when Marcus came
out and started crying. We were
ecstatic. Marcus was passed to the
neonatology group immediately for
treatment. We got to give him a kiss
before they wheeled him away to the
NICU. It is imperative to be at a
hospital with a good level 3 NICU.
Visit beforehand and make sure you are
comfortable with their philosophy and
confident in their medical
capabilities.
In the end, he needed respiratory
assistance (ventilator for 1 day, CPAP
for a few more days, and at six weeks
of age still has oxygen cannulas at a
very low flow and blend). His
prognosis is good, though. We think
he’ll just need a little more time for
his lungs to develop and catch up, and
that he’ll be off of oxygen shortly
after coming home, if not before. His
feet were cramped in the womb due to
the lack of fluid, and they are curled
inward, though the orthopedic staff
believes they are fixable with range
of motion exercises. We're still in
the NICU, but he’ll probably be coming
around roughly around his due
date.
This is one of the most difficult
situations a person can face. Be
confident that whatever decisions and
choices you make, you are doing the
best you can for your family. If
anyone would like more information,
feel free to contact me at
melanie.anderson25@gmail.com
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