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Jessica's Story
My Cornual Pregnancy was discovered April 24, 2003.
My husband and I had been trying to conceive for over
8 years. I do have 3 children previous to my husband and had no problems
with those pregnancies. My children are 17 girl, 13 girl and 10 boy. I
have never had an EP before this.
I realized my period was a week late one week after my
35th birthday. I had my husband run down to the store and get a
pregnancy test. I did it as soon as he got home and a faint thin pink line
showed up. We were standing in the restroom and discussing the line and I
started crying tears of joy. But of course I could not believe it so I had
my daughter run back to the store when she arrived home from work to buy
another test so I could take it first thing in the morning. I could barely
sleep. I took that test in the morning and that line was immediately dark,
wide and pink. We were so excited!
A couple of days later I called my GP for a referral to
an OB/Gyn for my pregnancy. The office gave me a name and number. I called
the OB/Gyn office and they said that the doctor would not want to see me
until 10 weeks so I had to wait for 5 weeks to see her. I didn’t think
anything about this. This is normal practice here in the states. Most of
our healthcare is regulated by the insurance companies, believe it or not,
and they won’t pay if the physicians don’t stay within their guidelines.
The weeks went by and I had this thought of what if I
have a tubal pregnancy? I had no reason to believe this but the fear was
there just the same. The weeks went by and I passed the “normal” amount of
time for a tubal pregnancy to show up and nothing. My thinking was I made
it and I’m home free. I don’t know why I had the feelings of dread. I
guess deep down I knew something was wrong, although there had been nothing
to indicate a problem.
April 7, 2003 the doctor’s appointment finally came and
I felt as if I was “just another pregnant woman”. She told me the timeline
of ultrasound/sonogram at 20 weeks, appointment every month until the eighth
month when it would be every two weeks and the ninth month every week. This
is the standard care here. I mentioned to her my last period had been short
and light, not normal. She ordered an ultrasound to confirm how far along I
was. I was very excited that I was going to be able to see my baby very
shortly. FYI a blood test was not ordered for me at this appointment so I
have no idea what my HCG levels were ever.
The doctor’s office called me a few days later and told
me my ultrasound appointment was scheduled for April 24, 2003 at 11:00 am.
I think the next part of my story is significant.
These are the only signs I had that something was different about this
pregnancy and I didn’t recognize these signs until after the surgery. The
day after the doctor’s appointment I felt the baby move and I mean MOVE. I
continued to feel the baby move up until the surgery. A couple of days
after that I got excited and had my daughter run to the drugstore and buy me
a stethoscope. I found the baby’s heartbeat with that stethoscope! I
listened to it every day until April 24th. Now I knew from my
previous pregnancies that you don’t feel the baby move at 10 weeks and you
don’t hear the heartbeat with a stethoscope at 10 weeks either. After
thinking about this I looked on the Internet for more information on this
and I saw stories of women feeling their babies moving early and they found
out they were having twins. So I thought maybe this was happening either
because I was farther along than we thought or I was having twins! I NEVER
had pain and I did not have any bleeding or even spotting.
The morning of April 24th my husband and I
were in the car on our way to our Ultrasound appointment. I was talking
about the baby, of course, and how I was going to need to get some summer
maternity clothes very soon. I couldn’t wait to see the baby.
We arrived at the hospital for our appointment.
We were soon taken into the room and we tried to hand the doctor the blank
VHS cassette we had brought to tape the ultrasound and we were told they
didn’t do that. (I later found out that this has something to do with
our FDA. This is one of the things I want to change. If I could
have had a video of the ultrasound at least I would have had something of my
baby alive.) The ultrasound began and there, on the screen, was our
beautiful baby. He was perfect and so active. He was moving all
over. At one point he put his right hand on his head. At another
he did the classic baby stretch, pulling his knees up to his chest and his
arms to his chest and twisting sideways. These are the images, the
only images that I managed to burn into my memory. After all, I didn’t
know at the time that would be the only chance I would have to see my baby
alive. I was so enthralled with my baby on the screen that I didn’t
even look at the doctor’s face during the first part of the ultrasound.
Dr. L. asked me questions about pain and spotting or bleeding and I told her
I had not had any pain or spotting. Then Dr. L. told me she didn’t
think the baby was in my uterus and she needed to do a vaginal ultrasound.
I asked her if the baby could live if it was outside my uterus and she said
no. I went into the other room to change and the tears started.
I went back into the room and she came back with the attachment. At
the end of the ultrasound I was given two of the pictures. After the
ultrasound was over she asked us to go out into the waiting area and wait.
I would need to have laparoscopic surgery to determine the exact placement
of the baby and probable removal of the pregnancy. She needed to call
the doctor on call, Dr. H., because the OB/Gyn doctor I was referred to was out
of town. That wouldn’t have helped us feel any better because I had
only seen her once anyway. My husband and I waited, I was crying and my
husband needed to cry but couldn’t there in the hallway. We were in shock
and still didn’t understand what exactly was going on. At this time I was
13 weeks pregnant. Dr. L. came back to us and said Dr. H. was doing a
delivery and asked us to wait. We said OK and said we would be back in a
few minutes. We went down to our car and I cried, my husband cried and we
tried to figure out what was going on and what we could do. I felt trapped
with my baby’s life at stake. Maybe they were wrong. We decided that we
would do something, we didn’t know what, but I wasn’t staying at that
hospital and having surgery right then, we needed to know more.
We went back into the hospital and spoke with Dr. L.
and Dr. H. had not called yet. Dr. L. started asking me when I had eaten
and drank anything last to schedule me for surgery. My husband said no,
don’t schedule an operating room yet because we weren’t staying. I don’t
remember the exact words but that was the gist of it.
Dr. H. finally called and I got on the phone and talked
to her. She tried to tell me how dangerous this was and she didn’t want me
to leave the hospital. She couldn’t convince me so she gave me her cellular
phone number and told me to call her if I felt any pain at all or started
bleeding. She also told me to call her if I had a question I needed
answered that she was there for us.
My husband and I left the hospital and went to see his
mother who is an emergency room nurse at another hospital, and a prior OB/Gyn
nurse, hoping she could refer us to someone and give us some kind of
guidance as to what to do. She called Dr. H. and spoke with her about this
condition, Cornual Pregnancy, so she could understand what was happening.
She had never heard of a Cornual Pregnancy either. She explained it to us
and advised us to meet with Dr. H. and discuss this with her in person. We
said we would but we were going home first. We wanted to get on the
Internet and try to find out more information.
My life was in extreme jeopardy and all I could think
of was how to save my baby. My very confused thinking was that I had no
pain, no bleeding and I hadn’t ruptured yesterday so I wasn’t going to
today. If I had seen my laparoscopy picture that day I wouldn’t have been
running around town.
We went home and looked on the Internet and found a
story about a lady here in the US that had a Cornual Pregnancy and that
story convinced us we had better meet with Dr. H. sooner than later. I also
looked up my prior OB/Gyn doctor, whom I trusted very much, that delivered
my last two children. He had moved to Texas and by the time I was able to
find his information it was too late to call him. We were home for about 3
hours and I cried the whole time. It was so unreal and much too real all at
the same time. Every time the baby moved I started crying all over again.
We called Dr. H. and set up a meeting back at the
hospital, she had to do a C-section and then we would talk. We went back to
the hospital and they gave us a private room so we could talk with Dr. H.
She arrived in the room only a couple of minutes after we arrived. I think
we must have talked about the situation for about 1½ hours. While my
husband and I were at home we wrote down a long list of questions to ask.
She answered every one. She went over the ultrasound pictures with us so we
could better understand what they were seeing. At one point the baby moved again
and I started crying and Dr. H. started tearing up. I actually felt better
knowing she really cared. She showed us she really cared throughout the
whole ordeal. My husband finally told me he didn’t want to lose his wife
and I needed to have the surgery. One of my questions, the most important
to me at the time was how my baby was going to die and what will they do
with my baby? She told me that once my baby was removed from the blood
supply he would quickly and painlessly go and he would go to the morgue.
Another question was how was she going to tell if the baby was in a safe
area or not? I also asked if there was any way my baby would live if I
didn’t have the surgery and Dr. H. said no. My baby was going to die
regardless of whether I had the surgery or not but we needed to save me. I
didn’t fully understand then. She said if there were any question at all
that she would not proceed with the pregnancy removal. The surgery was
scheduled for 9:00pm, it was about 6:30pm at that time.
A little while later they took me to my room where I
would be staying for the next couple of days and the wait began. The baby
kept moving, I kept crying and nobody called to say there had been a mistake
and I could keep my baby. It was the longest wait of my life, waiting for
my baby to die.
While I was waiting a nurse came into the room to ask
me a bunch of questions they have to ask before surgery. Then the nurse
came back a little later with the surgery permission forms for me to sign.
One was for the “laparoscopy, probable pregnancy removal and unlikely
hysterectomy”. The other form was for a blood transfusion if needed. Up
until that time I had not thought about the possibility of losing my
uterus. I refused to sign the paper until I spoke with Dr. H. one more
time.
9:00pm came and went. 10:00pm came and went. 11:00pm
came and went. They came to get me for surgery about 11:30pm. They asked
me to use the restroom. While I was in the restroom I said goodbye to my
baby and he was still moving around. He was quite an active baby. In the
pre-op room I spoke with Dr. H. again. She assured me a hysterectomy was
very unlikely. I also made her promise to take the laparoscopy pictures to
my husband to have the final say about the pregnancy removal since I would
be asleep and unable to make the decision. I was really scared because I
had never had surgery up until this one.
They took me into the operating room at 12:00am April
25, 2003. I thought, this is really happening I am really going to have
surgery and I am really going to lose my baby. I was very scared. The
anesthesiologist was on my left side while I was preparing to move to the
operating table. He came around to my right leaned down close to my ear and
told me he had slipped a little something into my IV. I asked him why he
told me then. He laughed and said if I got a little dizzy or something I
would know why. I needed that little bit of humor in that horrible
situation. I got on the table and got situated and was told to tilt my
head back. The anesthesiologist put the oxygen mask on me. Dr. H. leaned
over my face and looked into my eyes with her kind eyes, I felt the baby
move one last time and I started to cry. She told me I was going to be
alright and that is the last thing I remember.
True to her word about 15 minutes after I went in she
came out to my husband with the pictures. They were very scary and there
was no doubt that the pregnancy had to be removed.
I woke up in the recovery room at 2:00am in the worst
pain I had ever felt in my life. I asked the nurse about my baby and she
said they had to remove him. I started crying and asked for my husband.
Someone went out to get him. I don’t remember much after that because they
had me on morphine. My husband later told me that as soon as he got to me
in the recovery room I told him about the baby.
The rest of the night was very rough on my husband,
trying to take care of me and deal with his feelings. I didn’t feel
anything but physical pain, that morphine takes away your feelings.
Later that day someone brought me a picture of my baby
lying next to the sack and a picture of the sack. I just stared at
them. Later they brought me my baby. They told me he was a boy.
He was perfect in every way. He had all of his little fingers and toes
and I swear he looked like my husband. When I tell people that they
brought my baby to me they think it is terrible. I would have thought
the same before this happened. I am so thankful they brought him to
me. I just wish I wasn’t on that morphine so I could have cried while
I held him. I didn’t feel sad but I did feel awed. My husband
and I named him Matthias James Dale Seddens. (We had picked out this
name very quickly after learning of my pregnancy. For some unknown
reason it was very important to me to have names chosen
right away. I guess I know why now.)
The next day when I had the morphine out of my system,
(the day before I asked the doctor to take me off of morphine and give me
demerol), I found out about my body and the surgery results. The doctor
only had to take a very small piece of my uterus. She left the left tube
but it is no longer attached. I was very thankful for my life, and my
uterus, but was very sad about the loss of the use of my left tube. It took
us over 8 years to get pregnant with 2 good tubes.
Later that day we made funeral arrangements for our
son. He would be cremated and we would later bring him home. I got out of
the hospital that evening. I left a day earlier than the doctor would have
liked but I wanted to go home.
Since then I have been getting emotionally better. The
first week was a lot of crying. The second week was less crying. Now most
of my crying is at night when it is time for bed. I felt a lot better once
Matthias came home.
My husband has been wonderful through all of this and
still continues to be wonderful. We have talked and we both understand that
we will grieve in our own ways. If I start crying I get an immediate hug.
He is the best!
I met with Reverend W. two and a half weeks after the
surgery. She is a bereavement counselor at the hospital I had my surgery
at. She had never heard of a Cornual Pregnancy either. She asked me if
I had had any dreams since the surgery. I told her of my one dream about a
baby, but it was about a beautiful little baby girl with dark hair, but that
didn’t make since because we had a boy. I also told her about the night, a
couple of days after my surgery I heard a newborn baby cry, but it had only
happened that once and only for a few minutes. She has been very helpful to
us as well.
Update 1:
June 3, 2003 I received the death certificate in the
mail from the funeral home. It listed Matthias as being female! I called
my husband at work crying and told him about the error on the death
certificate. He got real quiet and said he had been trying to figure out
how to tell me. On my good days he didn’t want to ruin my day and on my bad
days he didn’t want to make my day worse. I understood, but it still hurt
that I had to find out that way.
Evidently, Reverend W. called him the day after our
meeting and told him she had looked in the computer and found out Matthias
was a girl. They had done chromosome testing to find out. Our meeting with
Reverend W. was 2 ½ weeks after my surgery. I had been grieving a son I
never had for 5 ½ weeks and had not grieved my daughter.
I called Reverend W. after getting off the phone from
my husband and she reminded me of my dream of the beautiful little baby
girl! The dream made since then. She apologized to me for the lady that
had told me she was a boy.
We are having the death certificate changed to Jessica
Gail Seddens. That was the girl name we had picked out.
Update 2:
We made an appointment with Mr. Dr. H., (Dr. H.’s
husband is a fertility specialist), to possibly have IUI, since it took so
many years to conceive before and Mrs. Dr. H. said I had very slight
endometriosis, and my right tube looked healthy from the outside. We had
our first appointment June 17, 2003. I had the workup and was told to call
and make an appointment for an HSG dye test for my right tube.
Update 3:
July 7, 2003, the day of my HSG. We went to have the
test done. I was very nervous, although my head knew it wasn’t going to be
much worse than a pap smear, my heart was scared to death of this test. I
was positive that there was nothing wrong with my right tube, since it
looked good during surgery and it didn’t show up on the ultrasound, (Mr. Dr.
H. said if we didn’t see the tube on the vaginal ultrasound that was a good
thing).
The actual test began, (it was just about like a pap
smear), and Mr. Dr. H. started putting the dye in. We watched on the
monitor. We watched my uterus fill up and that dye NOT flowing through my
right tube! Dr. H. had me tilt to the left and then tilt to the right while
injecting the dye in. Finally a thin line of dye went through my tube, but
evidently the dye is supposed to “shoot” through my tube and “spill” out the
end. I don’t remember what Dr. H. said but I started crying, sobbing
actually. I felt just about like I felt when having the ultrasound with
Jessica. Totally shocked, sucker punched! This was not expected or even
thought of. Dr. H. said I could have IVF that my uterus was perfect. I
told him through my tears that I don’t have that kind of money. He told me
that there were some programs to help us. We live in Arizona so there is no
state mandate for insurance companies and infertility treatment.
I got dressed and my husband, again, didn’t know what
to do with me. He tried to reassure me and comfort me but it was another
horrible day in a long list of horrible days for us since April 24th.
Update 4:
July 10, 2003, we had an appointment to talk with Mr.
Dr. H. about our choices. He spoke with us for about an hour. Our only
choice now is IVF. As far as I’m concerned I’m probably not going to be
able to raise that kind of money in a decent enough amount of time. I am 35
years old and my oldest daughter just started college. That was expensive!
It might be a while before there is another update to our story.
Update 5:
October 29, 2003, we had another appointment with Mr.
Dr. H. I am convinced that the dye test was wrong so I asked for
another dye test to be performed. He agreed and I am to take two
valiums before the test to relax my muscles. The HSG is scheduled for
November 17, 2003. I will update after the test.
Update 6:
November 17, 2003, I had my second HSG. I took my
valium an hour before my test and my tube is open!
Update 7:
November 21, 2003, we had an appointment with Mr. Dr.
H. to discuss our plans. Next month we will start on fertility drugs
to hopefully make eggs on my right side and then have IUI if all goes well.
Update 8:
I took my fertility drugs and even gave myself shots.
The shots did NOT hurt. The first shot I was to give myself took me
about five minutes before I could actually stick the needle in. When I
finally did I didn't even feel it! December 11, 2003 I went for my
ultrasound to see how many eggs we had made. I made four eggs on my
left side and only two on the right side so we decided to not do the IUI
this cycle because it wasn't worth it and no we didn't get pregnant on our
own. Next cycle I will be out of town so we can't try. But the
next one we will try again. I will update that try in February.
Update 9:
I took the fertility drugs again and made 2 eggs on
each side, the IUI was a go! We did the IUI February 8, 2004. 10
Days later I had a blood pregnancy test and it was negative.
Update 10:
We used the fertility drugs again and I again made 2
eggs on each side. I had the IUI March 8, 2004. 10 days later I
had a blood pregnancy test and it was negative. By March 25th I still
didn't have my period so I took a HPT and it was positive! I had my
first blood test on the 25th which came back at 56. The doctor really
didn't like that but we were still optimist. 4 days later on the 29th
it was 95 we didn't like that number either. 3 days later on April 1st
it was 186 but started spotting watery brown on Friday, April 2nd. Of
course my doctor went on vacation. Isn't that always the way?
April 5th, 4 days later my count was 360 at my regular lab and 237 at the
hospital. I was having pain in my right side and since my doctor was
on vacation was told to go to the ER. That was a horrible experience!
I go into the ER and tell them I am pregnant with a
possible ectopic. They do a urine pregnancy test and come back and
tell me it is negative! Now I'm thinking, did I already lose the baby?
The ER doctor comes in and pushes on my stomach so hard that if I did have
an ectopic it would surely rupture while he was doing that. A little
while later he comes back with my hCG count and tells me it's 237 and does
an internal exam. He wants me to get an ultrasound with my bladder
full. What they do is insert a catheter and fill up your bladder.
I refused and said that the vaginal ultrasound would be all we needed.
(I had an ultrasound with catheter and my bladder full last summer and they
did that ultrasound said they couldn't see well enough, drained my bladder
and did the vaginal ultrasound anyway. That is why I refused this
time.) So I had the ultrasound and they took me back to the ER.
Shift change and I had a new ER doctor. He was telling me I had fluid
in my abdominal cavity and they could not find an ectopic. Next thing
I know they are telling me I'm going to surgery! They called the
doctor on call and he was coming in to do surgery. They tried to get
me sign papers and I didn't. I needed to talk to the doctor on call
first and try to find out exactly what was going on. I knew I didn't
have a viable pregnancy but I still had my only tube to consider.
I arrive in the pre-op room and this is kind of funny,
the anesthesialogist is the same one from my previous surgery, he asks me
some questions and I answered but told him I wasn't sure I was having
surgery yet. The doctor comes in shortly and stands at the end of my
bed. I talked to him at length, but he never looked up from his
clipboard. I asked him what the fluid in my abdominal cavity is and he
said that it could be blood, could be drainage from my cyst, (had a
semi-large one on my right side) or even from the fertility drugs. So
far not a good reason to go under the knife in my book. I asked why he
felt I needed surgery then and he replied that they couldn't see anything in
my uterus. I told him you couldn't see anything in my uterus
with a hCG level of 237 and pointed out that they hadn't seen anything in my
tube either. He said that was true. Still only barely glancing
at me.
I finally talked to him about my tube. He finally
looked at me then and told me of course they try to do everything possible
to save the tube but sometimes they couldn't. In his words he did not
convince me that he cared about my only tube enough. After assessing
the situation, and with all of my newly gained knowledge over the past year,
I decided that I didn't need surgery at that time. I was not in an
emergency situation. I told the doctor not surgery and he said OK.
I knew then I didn't need the surgery for sure because otherwise he would
not have agreed with me. The pre-op nurse didn't know what to do.
I don't think she ever had anybody leave that room like that before.
They discharged me from pre-op and the doctor did give me his cell phone
number and told me to call him if I had any problems at all and I left.
Please, please keep in mind, had my life or my tube
been in danger, and the doctor insisted, I would have had the surgery!!!
Now my levels kept going up and down. Wednesday,
April 7th, (2 days after my hospital visit) my level was 251. (We need
to compare that to 360 on Monday because I'm back at my regular lab now, not
the hospital lab. Yes you can get different hCG levels from different
labs.) Monday, April 12th my count was 305. Wednesday, April
14th my count was 376. Had another ultrasound and it still showed
nothing and Methotrexate was discussed. If my count went up I was
getting the shot, if it went down, we were holding off. My doctor
would be back next Monday. Thursday, April 15th my count was 330.
No Methotrexate shot yet. Monday, April 19th, my count was 436.
Tuesday, April 20th I went for one more ultrasound to ease my mind and my
doctor gave me the Methotrexate shot. It didn't physically hurt, I
barely felt it, but mentally it hurt! (During all of the prior weeks I
was spotting almost daily, watery brown, pink, red and dark brown.)
I started really bleeding 2 days later on Thursday,
April 22. The next day the bleeding increased and I started cramping
pretty bad. (This of course happened at my brother's wedding.)
Saturday, April 24th I started passing small clots. By the 25th, the
clot size had increased, (1 year anniversary of Jessica's death).
We knew my hCG level was going to rise initially so we
didn't do another test until Monday, April 26th. Monday morning, April
26th, I woke up with horrible pain on my right side. I started crying
and telling my husband that my tube was going to rupture, I was pretty much
a basket case right then. We called the doctor's office and he told us
to come right over. (His office is five minutes away, convenient in
emergencies.) He did an ultrasound and everything looked OK and he
still didn't see an ectopic, of course he didn't see anything in my uterus
either. He sent me to the hospital to be watched. Ironic, isn't
it, last year on April 26th I was being discharged after my surgery and this
year I was being admitted for possible surgery.
When I arrived at the hospital I was given pain
medication and I was put on NO food, NO drink in case I had to be rushed off
to surgery. They finally let me eat a little Tuesday night and the
pain has subsided. While I was in the hospital I passed huge clots and
bled a lot. Wednesday, April 28th, the doctor came in to see me and
told me I could stay one more night or I could go home my choice. I
told him I would walk around for a while and see how I felt and then
determine if I would go home. On his way out, he said, "I know, save
the tube!" Is he not the best!
I chose to go home and that night I had the most
horrible cramping I have ever had in my life! But it was centered so I
was worried about my tube. I started bleeding heavily and passing 3-4
inch clots. The clots looked like liver, (I tell you this because when
I was looking on the internet to see if the clots, horrible pain and very
heavy bleeding was normal I hardly found anything. I didn't want to
keep bothering my doctor after I got home.) I asked my husband if he
thought they still had my room available at the hospital. I sure could
have used some pain management then!
Here are the rest of my hCG levels until 0.
Monday, April 26th, regular lab, 333, hospital lab 171. Tuesday, April
27th, hospital lab 171. Wednesday, April 28th, hospital lab, 155.
Monday, May 3rd, regular lab from now on, 155. May 7th, 89, May 14th,
19, May 21st, 0. I should have been almost 13 weeks by then.
My husband and I named this baby Julian Shaye Seddens.
This pregnancy was never officially an ectopic and we will never know for
sure.
I am now waiting for my next cycle to start and the
doctor is going to do another HSG dye test to check my right tube again to
make sure nothing was or is left in that tube before we start treatments
again. I should be getting the test in the next couple of weeks I
would think. I will update when I have the test.
Kelly Seddens
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