My name is Marya and I live in the
Tampa FL area. My little girl, Rebekah is a vasa previa (VP) survivor.
In May of 1999 I was beginning the
last trimester of my pregnancy (my sixth, I have two older children and have had
three miscarriages.) A prior ultrasound showed the placenta a little low, but
nothing to be concerned about. That May, during one week I was not feeling well
with cold symptoms. Rebekah's movements had slowed enough to really concern me,
and I called the doctor. He said I should go to the hospital and let them put me
on the monitor. That went fine; they said she was slow because I wasn't feeling
well. Well while I was there, the Dr. ordered another ultrasound and that is
when they found the vasa previa as well as a partial placenta previa.
They sent me home on modified bed
rest for a few weeks. My Dr. grew increasingly concerned, I live 26 miles from
the hospital and I was the first patient he had ever had with it, and he knew if
something happened that they could not get me to the hospital in time. SO, in
the middle of June, I was hospitalized for the remainder of the pregnancy I was
told over and over again to tell someone of the slightest spotting and under no
circumstances to allow anyone to do anything internally. The high-risk
specialist said to perform an amnio at 36 weeks. If lung function was adequate,
to take the baby then, if not, to wait another week and take her no matter what,
situation was too dangerous to continue beyond that point.
It was a very difficult time for my
family, especially for my 3 year old who didnt understand why I was in the
hospital. Well, she was not ready, so they waited another week until July 6th
and delivered her via c-section. C-section went fine, but she was having trouble
breathing and was sent to NICU. She stayed there for two weeks. When I got her
home she was 5.7 lbs. Now, at almost one year old she is 18 lbs and is a few
months behind developmentally, sees an occupational therapist once a week to
help her catch up. I have wondered if her small size and developmental problems
were due to the VP (my second child was 10 lbs)
Marya Mesa & Rebekah
When I was 17 weeks pregnant with my second baby, I went in for the routine
ultrasound that every pregnant woman can get. During the exam, we would check
babys size, organ function, gestational age, sex, etc.
While my second pregnancy was much
like my first, I was much more nervous during this one. But I had no logical
reason to believe anything would be wrong. Aside from slight morning sickness
and fatigue, I felt fine. My first pregnancy was normal, I was under 30, had
never smoked, and was in good physical condition. There was nothing about my
medical history that would put my baby or me at risk for anything.
I met my husband, Greg, at the office
of Dr. Harris Finberg, a radiologist who specializes in obstetrics. During the
exam, it took Dr. Finberg only took a few seconds to see a problem. He told me I
had something called vasa previa. Despite immersing myself in pregnancy books,
magazines, Web sites, etc., during both pregnancies, I couldnt recall ever
seeing anything written about it.
As Dr. Finberg described it, vasa
previa exists when a fetal blood vessel from the placenta or umbilical cord
crosses the entrance to the birth canal, beneath the baby. He told me this meant
Id have a c-section and that my OB would discuss with me other implications and
I returned home that evening and
scoured my books and magazines for mention of vasa previa and found nothing. The
closest thing I could find was a condition called placenta previa a condition
where the placenta itself completely or partially covers the entrance to the
birth canal. I was relieved to read that placenta previa was very manageable and
didnt pose much risk to the baby or the mother.
But when I spoke to my OBs about my
diagnosis, I found out something very different. Since the blood vessel that
crosses the entrance of the birth canal contains fetal blood, risk to the baby
is very high. If the blood vessel breaks, the baby could lose all its blood in a
matter of minutes or less. The mortality rate associated with vasa previa is
estimated to be as high as 95 percent.
They were going to treat me very
carefully. I was immediately put on pelvic rest (no sex, no internal exams,
etc.) and was told no lifting or intense activity. Since they wanted to keep a
close eye on me, they prepared me for eventual hospitalization.
At about 24 weeks gestation, I began
experiencing some uterine irritability. Knowing that contractions could cause
dilation and ultimately a rupture, I called my doctors. They sent me to OB
triage for monitoring and reminded me that I might not go home for a while.
My stay would last 74 days. While
there, I was monitored daily, medicated to stop contractions and put on strict
bed rest with only bathroom privileges. Being there also meant my baby had a
better, but not guaranteed, chance of survival if a rupture occurred.
Being hospitalized was very
challenging. Life as I knew it stopped. I was away from my home, my family, my
friends, my pets and my job. I had no privacy, the food was between average and
bad and my room needed a major redecorating. I felt like a caged circus animal.
But, whenever I felt badly about it,
all I had to do was think of my options. I could either be at home, knowing that
my baby could die at any moment, or I could not know about the vasa previa at
all. I could go in to labor, bleed, and lose my baby.
I had it the best way I could have
it. I reminded myself that my situation was temporary and that in five years;
these months would only represent a blip in my life. And, for this small price,
I could enjoy celebrating birthdays, holidays, and everyday with my child in our
home not at a gravesite.
Ten weeks later, after two rounds of
steroid treatments and an amniocentesis, I delivered Claire Elizabeth at 34
weeks gestation by C-section. She was small, but otherwise beautiful and
I still look back and am humbled by
it all. We were so incredibly lucky to have had Dr. Finberg involved. I am
convinced that if it werent for him, my life would be dramatically different
With the help
of the incredible women I have met through the Vasa Previa Foundation, we hope
to increase awareness among women and the medical community. Women need to know
about vasa previa and the medical community must look for it. As expressed by
the Vasa previa Foundations slogan, It only takes a moment to diagnose life.
Susan Mulligan and Claire Elizabeth
In September 1996, we lost a perfectly healthy, full term baby boy to vasa
previa (VP). Quite unexpectedly, as is most common. It wasnt diagnosed until he
was delivered by emergency C-section after a sudden but brief bleeding episode
at home. He only lived 38 hours - the most precious hours of our lives.
Nathan was a complete surprise for
our family. We were DONE having children. Having another one never dawned on us.
It took months to get used to the idea of expanding the family again. By the
time he arrived, we were really looking forward to it again. I had redecorated
the nursery and made baby clothing and a new blanket. My oldest son learned to
drive so he could help transport the others to ballet lessons and soccer
Then I arrived at full term - my
pregnancy had been completely uneventful. One morning I awoke very early. The
baby was awake too. I relished in the thought of his upcoming arrival, shared a
moment with him and we both fell back to sleep. An hour later I awoke and knew
something was wrong. I reached down to find my hand covered with blood. I got up
and ran to the bathroom. Sitting in the bathroom, I felt the baby turn and
thought, This may well be the last time I ever feel him move again.
My family called the doctor and I was
taken to the ER right away. The bleeding had stopped almost as soon as it
started. But there was a lot of it I was put on a fetal monitor that showed our
childs heartbeat at 130 and dipping. They got ready to do an ultrasound, but
then his heart stopped altogether and we were rushed into surgery.
The next thing I remember was being
told the baby was a boy, and was his name Nathan? I said, Yes. I was still
coming out of the anesthesia and thought, Its a boy. A sweet boy. Its over,
thank God, its over! I wasnt even able to open my eyes yet. Next, the surgeon
came in with the placenta and explained what had happened and what vasa previa
was. I still couldnt open my eyes or concentrate for much more than a moment at
a time. It turned out that Nathan had had to be aggressively revived and was
extremely ill. He was going to be transferred to intensive care at a local
childrens hospital. But he was here. He was alive. They got him out. I was
scared, but sure he would be all right.
They brought him to me just before he
was transferred. He was in an incubator type box, on a respirator and had tubes
and wires all over. He reminded me of ET in that scene near the end of the
movie. We had considered giving him the middle name of Elliot. Now I was sure
it should be Elliot. I was sooo happy to see him, but the hospital personnel
were somber and serious. They handed me some Polaroids they had taken before he
left the operating room. Hed already had two units of blood.
After that visit with my new son, I
was moved to a room in the maternity wing. Phone calls started coming in. My
sister-in-law delivered her baby THE VERY SAME MORNING! It was excruciating
receiving phone calls from excited family members who were initially unaware of
Nathans demise. It was along day and news from Cardinal Glennon wasnt good.
Two EEGs showed no brain wave patterns. My baby couldnt maintain a proper pH,
blood pressure or body temperature.
Against medical advice, I got out of
bed the very next morning so I could be with my son. Suddenly I felt extremely
guilty about abandoning him during his first 24 hours. If he was going to do
well he needed his mother, now more than ever. I asked to be transferred to his
hospital. They would not allow it. I told them I was going anyway. They gave me
a pass and I left. My poor child! The drugs were not helping much to stabilize
him and they couldnt give him much more because his kidneys were not
functioning. Specialists determined that his kidney problems would probably
improve on their own if his overall condition improved. I left with a heavy
heart. By the time I was settled back in my own hospital, Nathans doctors were
calling. He was getting worse and they needed to discuss things like heroic
measures. Oh, God! I was back at Cardinal Glennon Childrens Hospital within 30
minutes. My other children had just been there to see their brother. Word was
sent to intercept them and send them back up to the ICU. Nathans condition was
desperate. His kidneys were now bleeding which meant he would never regain use
of them. Every organ in his body was shutting down. We simply could not let him
die alone in that crib. His father held him for a few minutes then Nathan was
placed in my arms and removed from life support. He squeezed my finger when they
pulled the breathing tube out of his throat. We were moved to a private sitting
room in the ICU where Nathans brothers and sister took turns holding him. He
met his grandparents and some of his aunts. We loved him. And then we let him
go. At 10:50 pm he stopped breathing and was placed back into my arms where he
took one last breath and passed quietly from this world.
Cindy Paris and Nathan Elliot
I am 39 years old and have a beautiful daughter, Marie Claire who is 6 1/2 years
old. I had been promising her a baby sibling for years and had had a
miscarriage and D&C in April 2000 when at 10 weeks no heartbeat was found. In
December 2000, I discovered I was pregnant again. I was thrilled. The pregnancy
went pretty well, although I experienced severe vomiting during the first five
From the beginning I had voiced
concerns to my doctor because my cousin and one of my best friends had lost
their babies in 2000, days before their due date, one due to an apparent cord
strangulation and the other still does not know how.
Because of this, I had asked the doctor for a color
Doppler ultrasound the last four weeks of pregnancy
to check for cord positioning and although he initially said yes, at
around the 36th week he said no to the ultrasounds because the color Doppler was
too expensive and insurance would not cover. He reassured me I was fine anyway
and not to worry. He said that even if I did a weekly ultrasound, the cord could
strangulate the baby at any time (not too reassuring).
After my amnio in late March, the
doctor told me I had a marginal placenta. I had several ultrasounds and in June
the placenta showed to be low lying. In ultrasound on 7/13, the placenta had
risen to normal.
At the beginning of week 38, I was
diagnosed with high blood pressure. As soon as I learned about the condition I
began to practically beg my doctor to induce me or do a C-section, but he
refused arguing that since the cervix was high and closed and the baby was not
yet in my pelvis, induction would lead to c-section, which was too risky. No
matter how much I begged, it all fell on deaf ears. I was sent home and ordered
to lie on my left side for a couple days. I stayed pretty much on bed rest since
I was admitted to the hospital two
days before my due date on 8/24/2001 at 3 a.m. after passing two large clots of
blood at home and then bleeding a LOT more than normal, approximately 300 ccs
of blood (although Dr. and nurses asserted this was normal bloody show). The
blood was very liquid, not clotty and I kept asking at the hospital how come I
had bled so much but the doctor never ordered testing of the blood. Instead he
ordered a regular ultrasound (not color Doppler), which indicated a score of 8/8
and after 8 hours of monitoring I was discharged from the hospital even though I
begged the Dr. to "get my baby out" and to keep me in the hospital. The doctor
told me the hospital was full, the nurses were busy and they did not have time
for an elective procedure. I went home distraught.
Then the unthinkable happened 2 days
later. I was in bed at 11:30 p.m. and felt my baby kick. I said good night to
her. And then a second later, I felt a warm liquid. It was not my water; it
was blood, lots of liquid red blood. As I sat on the toilet bleeding profusely,
I called the Dr's service and he called back 5 minutes later. Although I
specifically yelled that I was hemorrhaging profusely, he calmly said, OK, we
are going to deliver this baby, go to the Hospital. He told me to drive to a
hospital that is 8 miles away instead of to the nearest hospital that is 1/2
mile away and he has privileges there too. Upon arrival there, nurses checked
for fetal heartbeat and none was found. It was only then that they notified the
Dr. and he arrived 10 minutes later. Ultrasound found no heartbeat, 40 minutes
had passed since my call and my Sophie Isabelle was declared dead at 12:11 a.m.
on 8/27/01. My worst nightmare had come true. My cervix was still high and
closed. We proceeded to induce and I delivered at 6:30 that morning. Sophie
Isabelle was a beautiful 6 lb 11 oz baby.
The blood on Friday the 24th was
fetal blood, not maternal blood, due to a small membrane rupture. This was a
huge warning that was ignored. If the doctor had had the blood tested with a
simple APT or Ogita test, he would have realized this was no normal bloody
show. Two days later, on Sophies due date, two days after our last warning,
she lost her life when my membranes ruptured and she exsanguinated due to vasa
I am now working with the
International Vasa Previa Foundation to increase awareness of this devastatingly
fatal condition amongst the medical community and pregnant women. 95% of vasa
previa diagnosis made antepartum result in the successful birth of healthy
babies when correctly managed by the OB, but up to 95% of vasa previa cases that
are undiagnosed result in the death of these otherwise healthy babies. A simple
transvaginal ultrasound with color Doppler as early as the 16th week of
pregnancy can diagnose vasa previa and prevent an almost certain fatal outcome.
It only takes a moment to diagnose life.
Victoria Goldstein and Sophie Isabelle
Last year, in June, Robert and I
decided to let nature rule. We have always wanted children and we thought that
the time was right now. We both felt like we were ready, and able to give our
child a bright future, surrounded with our love. Everything went great, we had
a wonderful pregnancy. ! I did not get morning sickness and the check-ups at the
midwife were terrific (blood pressure, blood- and urine samples, heartbeat of
Because we were not certain of the
date the baby was due, we had an ultrasound in December. We were thrilled when
we found out that I was one more month pregnant than we thought. Everybody said
I looked radiant from happiness and I felt great! Through the whole pregnancy I
had no complaints at all. Of course I slept less comfortable at the end and
walked less flexible but that is normal.
When I got my pregnancy leave, four
weeks before the due date I had enough energy left to paint the house (inside)
and do a lot of little jobs around the house, which had to be done before the
baby came. I traveled throughout our country to visit my friends and
sister-in-law who had just delivered a baby of their own. On Wednesday, May 23,
I drove all the way to the south of the Netherlands (2,5-hour drive) to visit my
parents. I went shopping with my mum to buy the last baby stuff (clothes, a
photo album), and we couldnt stop talking about the baby. The next day we would
drive back to Kwintsheul (near The Hague) and she would help me clean our house
and bring the baby cradle, which my mum and my dad had made themselves. The
whole family was very much involved in my pregnancy. They were actually a little
bit pregnant themselves. It would be the first grandchild for my parents and the
second one for Roberts father, who had just welcomed his first grandchild 4
weeks ago. We had a beautiful picture in our heads of how our child would grow
up together with little Julian, the son of Roberts brother, and how they would
But that night, from Wednesday to
Thursday, my water broke, at my parents house. I went to the bathroom at 3.30
in the morning and noticed that I could not control my urine, so I thought. Back
in bed I felt fluid flowing down my legs and then I realised that it could be
amniotic fluid. My mother and I couldnt sleep anymore and at 6.00 we got up and
drove back to Kwintsheul. I phoned Robert out of bed. We were so exited! It had
started; we would soon be mum and dad.
The midwife came by when we were back
in Kwintsheul and she confirmed it to be amniotic fluid. The fluid was clear as
water with little dark hair in it: baby hair of our long expected child! If the
contractions would not start the next morning I would have to go to the hospital
where they would artificially provoke the contractions. This because there would
be a big chance of infection if we didn't do so. That day we were in a party
mood. We knew for sure that we would become mum and dad that particular day or
the day after. We asked my mum if she would like to be present at the delivery
and she was thrilled. Robert went to work that day to finish the current things
and to tell everyone the good news. We agreed that when the contractions started
I would immediately call him and he would come straight home.
I went to the greenery to buy a fresh
pineapple, which I ate completely, because there appears to be something in the
heart of the pineapple that starts the contractions, at least that is what I
read. But the contractions did not come that day, or the night after. Too bad,
because we would have loved to deliver our baby at home. But going to the
hospital was extra safe, we would have nothing to worry about. There would be a
whole team of professionals and thus nothing could go wrong.
On Friday morning, May 26, we arrived
at the hospital at 8.30. I had to lie down in the middle of three beds in a row
and got belly ties attached to measure the contractions and the heart of the
baby. The doctor came to introduce herself. It was a young enthusiastic doctor
(named Annemarie) who reassured us: getting into labour in a hospital is great
The heartbeat of our baby was an
example of how it should be, and thus is was perfect! When the doctor touched me
inside, I appeared to have an opening of 3 cm, which was great. This meant that
they could start the injection with oxytocine through a tube immediately. Before
going into the delivery room I had to go to the bathroom and I noticed a little
bit of blood upon the toilet paper. But they told me that it was normal after
Then Annemarie came by to insert a
pressure meter to measure the intensity of the contractions, and an electrode
that they would screw on the babies head to measure the heartbeat of the baby.
But when she inserted the pressure meter, an enormous amount of blood came out
of me. I was terrified and tears started to roll down my face when I saw the
look on Annemaries face. Milani, now! I heard her shouting. After a telephone
call from the assistant, doctor Milani came in, the gynaecologist. Annemarie
still had her arm inside of me; she didnt dare to pull it out. Solution? she
asked. No, the blood is too thick for a solution, doctor Milani replied. When
Annemarie pulled her arm out of me a second stream of blood came out. The
gynaecologist put the electrode on our babys head anyhow and we saw the
heartbeat decrease. For one moment it looked like it was stabilising but then
the heartbeat rapidly decreased.
I was taken to the operation theatre
in a rush were they delivered Julia with a C-section. This was around 15 minutes
after the blood came out for the first time. Our baby came out of my uterus at
10.01 without a heartbeat. The paediatrician took over and started to clear her
longs and apply heart massage. In the meantime they tried to bring new blood
into her blood-circulation but they failed. After 17 minutes of reanimation they
gave up on her. Robert was there, during the reanimation and for ten long
minutes he still had hope. The doctors were working on her, it should be all
right. He held our Julia in his arms while I was waking up from the anaesthesia.
I saw people in green coats all over me were driving me across the corridor to
the delivery room. They all looked very sad. How is my baby?, I asked, but no
one answered. I asked it again and again. The doctor will be here any minute,
one of them replied. And then I knew. I started crying and suddenly I heard
Robert crying heartbreaking. No!!!, I shouted and Robert put the baby in my
arms. Its a girl,' I heard somebody say. She was so beautiful! This wonderful
little creature, our Julia. Why? How is this possible?
Later it appeared to be diagnosed
with Vasa Previa and velamentous insertion of the umbilical cord. This was
stated during the operation. While inserting the pressure meter they probably
have ruptured a vessel, which belonged to Julia and made all the blood in her
body flow away. A little baby has only 300 ml of blood in contradiction with an
adult who has 5 litres. She was perfectly healthy, a beautiful girl of 3625
grams (which is a little more than 7 pounds) and 50 cm. She had everything
present to be able to cope with the world. But it was not meant to be.
Our whole world collapsed, we had been looking forward to this baby girl so much, she was so welcome Suddenly your hands are empty and my belly too. And this while everywhere around us perfectly healthy babies are being born. Why us, why our baby, she still had everything going for. Why did they have to use that stupid pressure meter while the ties around my belly also worked all right? Why didnt they do a check-up before after which they would have performed a C-section immediately. All questions without an answer.
She will always be our first child,
our Julia and we are her proud parents. We have beautiful pictures of her that
we love to show to everyone. But life at home, after the hustle and stir of the
funeral, is empty and meaningless. Everything brings up memories of her and the
life we could have had with her, the life we desired so much. The days are
filled with tears, consternation and search for distraction. It will still take
a long time for us to deal with this enormous loss. Life goes on around while
for us the world seems to stand still, we do realise that. And we also know that
the tough edges of our sorrow will wear off. We also know that life will have
its new beautiful moments where we can get our strength from, although it is
hard to imagine that right now. It just takes time.
We want to do something with all our
feelings of unbelief, anger and inability we have right now. We want to prevent
other people of losing their babies the same way as we did. Internet taught me
that Vasa Previa is a symptom that appears in 1:3000 pregnancies. I would say
that is a whole lot! The mortality rate is 50-90%. With a Doppler Ultrasound it
can be made visible in advance and a C-section can be made.
Besides this we are furious about the
insertion of the pressure meter that seems to have ruptured the vessel of our
little girl. They seem to use two kinds of pressure meters in the hospital we
went to. One is very thin and flexible while the other one, the one they used,
was very stiff, surly and big. In the delivery room where I was brought to they
used instruments that could only be combined with the stiff pressure meter. The
doctor that inserted the meter (Annemarie) told us afterwards that she would
never use that kind of meter again. Too late for us though.
From others we heard that the
hospital of their choice did not use any inserting material at all. They use the
belly ties through all the deliveries. Having used those, Julia would probably
still be alive. Especially because 50% of the babies that die because of Vasa
Previa, most of all die during the rupture of the membranes and they were
already broken in our case. Nature did his job right, it should have gone well.
We recently found out about an
academic thesis named: The policy of premature broken membranes à term by P.
Ottervanger. She contradicts the words of the midwife and the hospital; in fact
she says that it is preferable to wait for the contractions for 48-72 hours and
that the chances of infections are to be neglected. When nature would have gone
its course, there would have been a chance that Julia would have lived now.
Besides this Ottervanger wrote about Prostaglandin as the preferable way to
provoke the contractions, above oxytocine which involved inserting the pressure
meter. Why didnt they use that?
We feel that the medical science has
failed. We had 3 chances of bringing our baby healthy to the world. By waiting
48-72 hours before artificially starting the labour process, letting them
investigate me through ultrasounds before inserting dangerous instruments, by
using a belly belt instead of a pressure meter. We do realise that it will not
bring our angel back but we cannot put it aside us. Somewhat later, Robert
thinks he remembers that the obstetrician -who has performed the Ultrasound in
the beginning of our pregnancy- told us that the umbilical cord was not in the
middle of the placenta, but that seemed to be no problem according to her. They
should have investigated us further then already.
Weve had two appointments with the
gynecologists. They feel that they have to do something with this case and told
us they are going to organise a congress about Vasa Previa in Holland. They want
to share experiences, discuss how to prevent situations like ours and how to act
when the blood loss does occur.
Marlou van Dijck and Julia Elisabeth
I would like to tell you about my
miracle baby. I would be very surprised if you had ever heard of the
condition, vasa previa (VP). It is a little known condition that occurs in
1:3000 pregnancies. The fatality rate is 50 to 90%. I was told that if
undetected before birth, the fatality rate is 95 to 100%. And this begins my
In June 1996, my husband and I found
out we were expecting our second child. We were thrilled! My first pregnancy was
textbook, so I didnt foresee what we would go through.
When I was eight weeks into my
pregnancy, I noticed some spotting. Since this did not happen at all in my first
pregnancy, I made an immediate appointment with my doctor. An ultrasound was
done. My doctor informed me that everything was fine, except that there was an
extra lobe on the placenta. (I have since discovered that this is one of the
primary indicators of VP.) The doctor informed me that the only complication
would be if they didnt know about it during delivery and all the placenta did
not deliver. She said that since we knew, there would be NO complications. She
did, however, follow-up with subsequent ultrasounds during my term. The lobe
seemed to move, disappear, reappear, etc., but that should still cause no
problem. I still felt very good about this pregnancy and did not worry at all.
At 36 weeks, I awoke one morning to a
LARGE amount of blood. I immediately woke my husband and while my brother came
to stay with our two year old, Bob rushed me to the hospital. We saw a resident
doctor in fairly short order and another ultrasound was performed and the belly
strap was put on to keep track of the babys heartbeat This ultrasound showed
that the baby was breech. An obstetrician was called in because of the bleeding.
The nurses wanted me to getup and walk, but every time I did, the bleeding
increased. They did not seem to think that the bleeding was a problem. They were
more concerned with the fact that the baby was breech. The resident voiced his
opinion to us; saying that he thought a caesarean should be performed that day.
My family doctor thought that a C-section was unnecessary, but that they should
induce within the next day. The obstetrician came in, looked at one ultrasound
very quickly and left I was kept in the hospital over night and Bob took the
next day off thinking that I would be induced. My doctor called the next morning
and said that the obstetrician wanted me to go home and take it easy until labor
started on its own. Him being a specialist, I really thought he knew what he was
talking about (By this time, the bleeding had stopped.)
I went home, happy to be back with my
husband and son. I called my place of employment and told them that I would have
to go on disability until the baby came as per doctors orders. They were great
about it the doctors told me to stay on bed rest, except for going into the
hospital every two days for a bio-physical profile (an in-depth ultrasound.)
Things went fine for 12 days. Then,
on the morning of Jan. 27, 1997, I once again awoke to profuse bleeding - bad
enough that I initially thought that my water had broken. I was much calmer this
time, due to the casualness that the medical staff seemed to be treating this
with, but I did prepare to go to the hospital right away.
When we arrived at the hospital, it
was exactly as it had been the previous time. The same resident was on duty, the
nurses set up the ultrasound and the belly strap was used. Nurses would
periodically check in to check the heart rate, but other than that, we were just
left there for two hours. I asked if anyone had called my doctor and was told
that they could not call her until something happened (what exactly, Im not
I finally sent my husband off to
work, thinking he should save his time off for when the baby did come and this
looked like it was going to be a repeat of our previous visit. As Bob was
walking away from the room, I felt a gush and though my water broke. I screamed
for Bob to come back. He called a nurse and we were all excited until we saw
that my water did not break, but it was blood. The nurse tried to find a
heartbeat, but couldnt. She called the resident in and he also could not find a
heartbeat All of a sudden, they shoved Bob out of the way and said they were
taking me to the OR. The last thing I remember is a bunch of doctors and nurses
standing over me with scalpels.
When I awoke, Bob and my doctor were
standing directly over me. I asked how my baby was and all they doctor said was
that she would pray. They did not expect the baby to live 24 hours and so they
took a Polaroid picture of her for me and tolled my stretcher up and into NICU
to see her. She looked fine to me, other than being hooked up to a ventilator
and all the other monitors. I was told what happened when she was born.
Apparently, Carlyne ruptured a blood vessel and that was all the blood. She lost
3/4 of her blood supply, thus her heart quit beating. She was born at 10:15.
Neonatology was waiting for her and worked on her unto 10:30 to resuscitate her.
This may sound morbid, but it makes me realize how close we were to losing her -
the neonatologist told me that he was just going to call time of death when she
took her first breath. She also received a blood transfusion upon birth and, in
the event of seizure, phenobarbital was administered (and overdosed, we found
out nine months later).
The next day, Carlyne was still
living and holding her own. We were called into the neonatologists office. He
told us that, yes, Carlyne would live. But, she would be mentally and/or
physically handicapped, to what degree, nobody knew. We were thrilled that she
would live and devastated to learn the challenges she would face in her life.
Carlyne was released from the hospital after two weeks (her due date). She would
have been released a week earlier had it not been for the phenobarbital
overdose. To me, she was a perfectly normal, happy baby, and thats the way I
continued to think of her.
For the first year of Carlynes life,
we spent at least two days a week in doctors offices. We went to pediatricians,
neurologists, development doctors, physical therapy, you name it, Carlyne
endured cat scans, KEGs blood work, etc. At one point, when she was three
months old, and I was very happy with her progress, we had an appointment with
the pediatric neurologist. At the end of the appointment, he said she appeared
to be a normal, healthy three-month-old baby, but don't get your hopes up - no
child can go through what she did at birth and not be disabled in some way. I
am happy to say that Carlyne had her last appointment with him at eighteen
months and he said that he was very glad to eat his words and that she was the
sunshine in his day. At thirteen months, when she started walking, Carlyne was
released from physical and occupational therapy. At 2-1/2 years, my daughter
knew her alphabet, could count to 10 and knew her first, middle and last names.
Neonatology said they loved seeing her, but after that day, they never wanted to
see her again. My daughter was finally given a clean bill of health.
Thinking back, if my doctor had
looked further into the extra lobe, she may have had some indication as to the
VP. Also, the first time I went into the hospital, had they tested the blood,
they would have known that it was Carlyne bleeding, not me. And finally, if they
had done a C-section that day, before any blood vessels had had a chance to
rupture, she would have been born PERFECTLY HEALTHY and we could have all had a
much happier and stress free 1997.
Bob, Ryan, Carlyne and I are very
fortunate. Carlyne is alive and with us. This happy ending does not occur very
often, if at all. We count our blessings and thank God every day for her. My
goal through all of this is to make the make the medical community and people
planning on families more aware of vasa previa and its complications. We dont
want to scare mothers, but if VP is detected early in the pregnancy, it can be
dealt with and chances are you can have a perfectly norm al, healthy child with
a planned C-section. One simple test can mean life or death to many children.
1:3000 is a pretty high chance. My goal is to make a color Doppler exam part of
every prenatal program.
Debi & Carlyne