
I met my husband when I was 14 and he was 17 years old in our
hometown of Bay Village, Ohio. We dated for 6 years and got married
at age 20 and 23. It was the year after my sophomore year at the
University of Kentucky. I took a semester off, and then returned
to a local college to finish my degree in West Chester, PA where
we moved after we were married. After graduation, I worked a full-time
job and saved all my paychecks for the down payment for our first
house that we were dreaming of. Another 2 years went by and I was aching
to have children. I was extremely homesick to move back to Bay
Village.
In April of 1989, we were back in Bay Village for
Easter. I have always been very private in my relationship with
God. I grew up in the Bay Methodist Church, a beautiful church
along the water of Lake Erie. When the church was empty, I went
back and sat in the last pew. I bowed my head in tears telling
God how deeply I wanted to come home, how all I have ever wanted
in my life was to marry Steve, have children, and live in Bay
Village. I said, "I want to go wherever You want and need me to
go, but I hope and pray that I can come home."
Steve had been looking for a new job for 2 years.
When we came back to West Chester after Easter, within one month,
he had a job coming back to Cleveland and at age 24, I was pregnant
after the first try. We were going home. It was a miracle.
On Mother's Day, I called my friend to tell her
I was pregnant. I told her, "Maybe it's twins!" It was
not even a question, I knew.
We moved back home into my parent's house so we
could look for our first house. On July 20, I went to hear my
baby's heartbeat. We were very excited. The doctor placed the
stethoscope on my tummy and we heard it. Then, I just looked up
to him knowing there was more. I said, "Maybe you will hear
another." He looked at me strangely. Then, his eyes got big.
He said, "My God, you are right!" This is a moment that truly has no words
to describe the depth of the joy. I felt so
chosen and special. My dreams were all coming true. My prayers,
alone in my childhood church, all coming true.
The next day, we had our first ultrasound done to
confirm our twins. I was alone with the ultrasound technician
as she began. Then, she left the room get my husband and my mother.
I could not wait any longer. I had waited 6 years to get married,
4 more years until getting pregnant. I had followed all the 'rules'
in life to get to this point. I turned my head to look at the
ultrasound screen. My two little boys were looking right back
at me. It was the happiest day of my life. Later that same day,
Steve and I bought our first house in our hometown of Bay Village,
Ohio, 411 Longbeach Parkway.
I always felt that if you were a good person, nice
to others and followed the 'Golden Rule', that if you were truly
'there' for your family and friends and followed God's laws, that
good things would always happen. It did not take me long to realize,
however, that even good people have bad things happen to them.
Two days later, I was in the most severe pain I
could ever imagine. It had been slowly approaching in the previous
two weeks. Monday, I began what was 36 hours of screaming pain.
It was all on my left side. I would have burning, shooting pain
down my legs and up my back. We called anyone we could think of
in our family and everyone had 'answers' of where the pain was
coming from. I did exercises, positioned my body certain ways,
and laid back in a Lazyboy chair, then struggled in bed. The pain
would not stop shooting. I remember crawling to the bathroom and
just crying from my soul. I kept telling my husband to massage
the pain away, to chase it with his hands and make it stop. Then,
at one instant, he grabbed my tummy in an attempt to massage it.
I screamed the most horrific scream; "You just grabbed a
tumor!" I could feel the 'ball' inside me. My husband turned
white and his mouth dropped open. Slowly, he said, "Mary,
if you are in that much pain you have to go to the hospital!"
Never did that thought enter my mind. I cried with tears running
down my face, No! I will NOT go to the hospital. If I go to the
hospital that will mean something is wrong with my babies. I will
not let something be wrong with them! I just got them and nothing
is going to take them away from me!"
The night went on unchanged. The next day as well.
Finally, we called our doctor and begged to be seen. It was not
until that night at 7PM. In the waiting room, I could not stand,
I could not sit, I could not move. I just was. Somehow, I slowly
entered the exam room. The pain was excruciating. He tried to
touch me and I screamed, 'No!" The man did not know what
to do with me, but he should have. He told me I had the flu. He
sent me home on pain medication. That was it.
I was afraid to take the medication for fear it
would hurt the babies. Out of desperation, I took two pills on
the way home. I felt only drowsy, the pain continued. As the week
went on, I stopped taking the pills. My fear was just too strong.
I was also getting increasingly nauseous. By Friday, I began the
medication in the morning. But, by the afternoon, the nausea was
out of control.
Just one week after hearing the best news of my
life, I was dry heaving every 3 minutes and I could not stop.
My doctor told me over the phone, "It is time to come into
the hospital." I could not fight that idea anymore. I gave
up, and we went.
On the drive, I felt almost happy. I was relieved
that we were finally going in. I told myself, "This must
be what it feels like to take that drive to the hospital to deliver
your babies." Steve drove cautiously slow. With each bump
of the road, I cringed in pain. In looking back. I only had one
day. One day of joy, completeness, feeling chosen and blessed.
I only had one day.
At the hospital, they gave me more medication. Demerol
did not even make a bit of difference. My OB came in and said,
"It is at times like these, when I do not know what is wrong,
that I need to send you to a high risk doctor." The ultrasound
was the next morning.
The ultrasound began. It lasted close to 4 hours.
How I laid on that table for that long, I do not know. I kept
begging the doctor, "Please, please tell me is there something
wrong with my babies!" He would not answer. His only reply
was, "After, after. In my office." His face was blank.
He pierced at the screen.
In his office he told us, "You have twin to
twin transfusion syndrome. It does not look good for one of your
babies and probably both." I said, "Twin to twin what?"
I had never heard of it before. I instantly succumbed to shock.
He started talking. The room began to get cloudy as if a fog machine was turned on. I turned to look out the window. It was
a beautiful sunny day. But, I would no longer ever be the same
person again. He spoke, but I could barely hear him or see him.
I only managed to hear the words; "There is nothing that
can be done."
I also learned that the pain I had was from a large
fibroid tumor in my uterus. It was on the left side. As my uterus
grew in the next week, the pain would subside. The diagnosis,
however, remained.
We spent that night in the hospital in devastation.
Everyone was whispering around us. We were nothing but gossip
amongst the nurses on my floor. The next day, we demanded a consultation
with our OB and the high-risk perinatologist. There was no plan
for our babies. We felt there must be something
that could be done. The perinatologist told us without compassion,
"Look, I have a whole stack of medical articles on the floor
in my office, but none of them are going to help you." They
took away our ability to try, our option to try, our right
to try.
They had told us that some people are trying amniocenteses,
but added, "We don't think it works." They knew about
laser surgery by Dr. De Lia, but chose not to tell us. We were
robbed.
I was 18 weeks pregnant. I had already been on bed
rest since 8 weeks into my pregnancy from hyperemises, severe
vomiting. I had lost over 20 pounds, suffered the pain of a fibroid
tumor, and diagnosis with twin to twin transfusion syndrome. I
refused to accept what they were telling me. I was going to fight.
But, there was no Internet. There was no parent to call for support
and guidance. There were no second opinions. There was only me,
in a house, in a room, in a bed looking out the window as the
seasons changed. I would look up into the sky. The trees were
my friends.
I was not seen for another ultrasound for 4 weeks.
At 22 weeks, there had not been much change. My babies were 30%
different in size and my little one was stuck without fluid.
His Doppler had no end diastolic flow. At a previous
appointment, somehow I saw on my chart the word 'Male". I kept this to
myself. During all the time alone, I named my boys. I named my
donor baby Steven James, after my husband. My husband is the most
selfless person in the world, just like his son. I named my recipient
baby Matthew Steven, gift from God. We already had the closest
relationship one could. I would talk with them, sing to them,
and pray for them. I would sleep with their ultrasound pictures,
stare at the picture of our new house we were waiting to close
on, and dream of Christmas when the nightmare would be over. I
would dream of my boys at the top of the stairs Christmas morning
in their matching sleepers anxious to come down to open presents.
I would dream, hope, and pray all day and all night. All I had
was time. Time was moving too slowly. I had no idea what yet was
in store for us.
My next ultrasound was at 26 weeks on a Thursday.
We were getting so close to our goal of 28 weeks. We had moved
into our new house. I was living in the dining room. It was a
logical place to be, right next to the kitchen, near a bathroom
and on the first floor. There was a door out to a porch so the
fresh air could come in.
A woman had come to visit to welcome us to Bay Village,
not realizing that I knew every niche in all the sidewalks from
end to end of the seven-mile stretch of the city. Once she was
there, I wanted her to leave. I had been swaying back
and forth from the importance of monitoring movements to pre-term labor. I had
never been pregnant before and did not understand what I was to
be looking for. I suddenly changed from pre-term labor worries
to how many movements in an hour is a baby supposed to move. I
just wanted her to leave and she finally did. An out of state
friend called me, and I had the same panic to hang up the phone.
There was no concentration within me but for the movements of
my babies. I felt numb.
I had called my OB and specifically asked, "How
many times in an hour is a baby supposed to move?" The woman
was rattled with a lack of words. She told me to chart the movements
for each baby and bring it to the appointment on Thursday. These
words were foreign to me. Was I supposed to get graph paper and
make a chart? Why was it so complicated? Why was it all upon me?
It was their job to monitor my babies not mine. The pressure was
monumental and unbearable.
Tuesday night, I was up in the night to use the
restroom. This is always when Steven would make himself known.
He loved the night. He got that from his mommy. As I slowly got
out of bed, I walked to the bathroom. I had had panic all day.
I could not get comfortable. I could not turn from my left to
my right side. I felt tremendous pressure like a
ballon filled to the max with so much air it was about to burst. I got into the
bathroom and sat down, my left hand never leaving my left side. I was always 'holding Steven". It
was then that I felt the most profound kick, strong, determined
and isolated. I knew it wasn't good-bye, only "I love you
mommy."
Thursday finally came. At my OB's, he told me he
heard heartbeats at the same rate. He heard my heart rate, but
only one other. He wanted me to get an ultrasound that afternoon
at two to get both heartbeats. He said he was not sure what he
was hearing. I walked out of the exam room; I got a glimpse of
his woman partner in tears. Nothing was said to me. I went immediately
into the bathroom still holding this yellow legal pad piece of
paper with 'x' marks in two columns. I was crying so hard I got
black ink all over me. "What am I supposed to do with this
stupid piece of paper!" I bent over crying. The doctor said
to go home, have some lunch. The entire time I continued to seek
Steven. "Please Steven, it is mommy, just one more kick,
PLEASE! I love you so much, Please Steven Please!"
I laid on the ultrasound table, yet again. My fingers
were crossed on both hands and my feet were crossed. This was
only the beginning of severe superstition, depression, and obsessive-compulsive
problems. I turned to the screen, just like the happiest day of
my life months earlier. This time, I only saw one baby. It was
Matthew, my recipient baby. There was his heart. It was beating.
Then, they slowly moved the monitor to my left side, just like
the happiest day of my life, when I knew we would hear my second
baby's heartbeat. But today, he moved the monitor over to Steven.
The waiting seems like eternity. The silence literally was killing
me. Without turning to look at me, just peering at the screen,
"I am sorry honey, his heart isn't beating anymore."
I became hysterical. They could not keep me down.
I cried, "Maybe his heart will beat again". "No
honey….no." And, he shook his head."
My Grandpa Joe's image was with me. I was a child,
telling my grandmother on her couch, the Friday after Easter as
the ambulance drove away in the middle of the night, "Maybe
his heart will beat again? Maybe he will rise like Jesus in 3
days?" The Friday after Easter since a child, since that
day, I have always called, 'Bad Friday". I cried as I begged
it to be me instead. I had had a good life. I had all the firsts…starting
to walk, my first birthday, riding my bike, Christmas and
so much more. I would have given my life in a second. I still
would today. It should have been me. It should have been no one.
In agony, Steve and I waited until the ultrasound
was finished. I rushed to the bathroom, walking right past my
OB who had come to confirm his suspicions, and fell to the floor
crying. As I walked back down the corridor bumping side to side
into each wall. I sat, again, by the window in the perinatologist's
office. This time, I did not one single thing he said. My beautiful
baby boy had passed away. At that moment, I had too.
How could it be a sunny day again? How could the
world not even take notice? My life was over, I was gone. Steven
and I cried all the way to the car. We sat in that car in the
parking garage for hours unable to move. We were paralyzed with
grief and fear.
Two days later, I went into pre-term labor. It happened
4 times during the next 10 weeks. We were terrorized by the thought
that when Steven passed away, bleeding through their connecting
blood vessels in the placenta could have caused Matthew to go
into shock. He could be killed, I could be killed, or he could
be neurologically damaged. After they got my first episode of
labor under control, they brought a faulty monitor into my room
to hear Matthew's heartbeat. The nurse could not get a heart beat.
I looked at Steve across the room with that same alarm knowing
it had happened again, Matthew passed away. For the first time
in the pregnancy, I became a tyrant. "Get the doctor in hear
NOW, go get a doctor, tell me what is going on NOW!"
A perinatologist came into the room. He was my doctor's
partner. He fooled with the machine and then said, "Get another
one." The nurse came in with a second machine and we heard
Matthew. I cried and I curled up in the bed. Before I knew it,
the doctor was gone. I told Steve, "Hurry, go find him, ask
him what just happened!" This was the doctor's reply. "You
are going to have to stop thinking about death or you will end
up in a psychiatrist's office, I have seen it happen before. Do
you really want your wife staring out the window for the rest
of her life?"
This doctor destroyed much of Steve and my life.
He stole from us years of being close and getting the help that
we needed. He made us feel there was something wrong with us because
we had the emotions and feelings we did. We just lost our son
2 days earlier and thought we had just lost our second son. They
also brought that faulty monitor into my room three more times
during that hospital stay. The entire experience with our doctors
and nurses from diagnosis through delivery was appalling and shameful.
What he should have said is, "I am so deeply sorry. Let me
bring someone in to talk with you, comfort you, help you."
There was absolutely nothing. That remained unchanged until the
birth of my babies 10 weeks later by c-section.
The attitude fluent amongst everyone around us was
to be grateful for the baby we had. Concentrate on the 'other
baby' they said. This too was horrible. It only added to the feeling
that we were not supposed to grieve and that it was not OK to
cry. All of this at the same time that the status of being pregnant
with twins was taken away. Every single appointment, and I went
in two times a week now, had to be a new explanation to a nurse
of why I was there. Repeatedly, I had to tell them what happened
to Steven. They should have known. There was never a compassionate
reply after the story was told. Not once. The message constantly
given to us was, "You have got to concentrate on the other
baby, you have to be strong for the other baby." This was
the worst advice to give. Grief overtakes all
emotions. You don't have to be strong for the other baby, you
already are strong. That is a given. You don't have to 'try'.
It is OK to cry. It is OK to lock yourself in your bedroom and
cry for weeks. It is better to be open with your feelings. Doing
so will not hurt the second baby. That baby is grieving too.
Now, I was trapped with feelings I was told I could
not feel. I was pressured to think only about one baby when I was
pregnant with two. I had to continue the bed rest this time in
a different room of my house. Just one more attempt for others
to try and erase the months I spent in the dining room, to try to take away the deep
sorrow and reminders. But, did they not stop
to think that Steven was still inside me. At 2 pounds, do they
think he would still not find a way to say, "I am still here!"?
Every time Matthew would move, so would Steven.
I would still feel Steven move. It took me years to be able to
put into words what I felt at these times. It was like Steven
was in a car that was on fire or drowning in the water. I could
see him and he was banging on the windows, "Mommy, mommy
HELP ME!!" I was running and running and running to him,
but could never get close enough to him….but, I had to watch."
This is what I felt every time I would feel him.
This is what I felt every time I saw him on ultrasound for the
next 10 weeks. This is what I felt all the time, but there were
no words. There were no words, there were no people around, nor
was it made permissible if there were to say them or share them.
The delivery was never spoken about or planned for.
I was convinced that I was not going to survive the delivery.
I came very close to writing letters to all my family and friends.
Superstition had sucked me in. I would not eat the food I ate
when Steven was alive because I thought it would kill Matthew.
I slowly stopped watching TV because all the commercials had to
do with babies. At my last ability to watch, it was the Home Shopping
Network with one hand over part of my eyes so I would not be able
to see their 'Countdown to Christmas" in the top right corner
of the screen. Christmas was what I lived for, the time the nightmare
would be over, the time when my babies would be in my arms. I
never gave up on them, once. As I said, my soul went out the window
the day they told us Steven passed away, September 28, 1989. I
watched this program until he spoke of his wife giving birth.
Then, I never watched again. I could only look at clothing magazines
and spent every single waking hour monitoring Matthew's movements
with a clicker my mom gave me from the hospital where she worked.
Matthew would move, I would click. At the end of the hour, I would
write down the number. Sometimes, I did not know if it was the
clicking of the clock on the wall, or my clicking that I heard.
It was all a blur.
When my husband would come home from work, his brand
new job that brought us to Cleveland, he would make me dinner,
rub my feet, and tell me animal stories. I would say over and
over, "Superstition does not exist, right?" He would
say, "No, it is not true, it does not exist." I would
say, "He is OK, right?" Steve would say, "He is
OK." If Steve said it, it would be true. But, he had to say
it a lot. And, this is all we said to each other. It would get dark early
because winter was coming, and we would go to bed.
I would drift off to the sound of clicking.
We went in at 34 weeks for an amnio to check for
lung development for Matthew. The night before, Steve and I filled
with love for Steven, gathered gifts for him thinking we were
going to see him the next day. To get through my bed rest before
September 28, I had needlepointed on my side, Christmas ornaments
and two baby bibs. I worked that night in a panic to finished
Steven's. I was crying because I did not have the right color
thread, but I did it. I had been given matching knitted booties
for them, so took out a pair for Steven. Then, years before I
ever got pregnant, I have bought pictures of Jesus hugging a lamb.
I bought one for each of my future children and for Steve and
I. So, along with our Eternal love, we had an ornament of Rudolph,
a baby bib, a pair of booties and the picture of Jesus and the
lamb. Steve put them in a bag in his car.
The amnio came back negative. The news was devastating.
I had gone into labor for the third time. Since 26 weeks, I was
taking medication every 2 hours, 24 hours a day to stop the contractions.
That was also part of the problem to my severe depression, having
to set an alarm clock every 2 hours. The two occasions that I
overslept were major emotional catastrophes.
We had to go 10 more days. Matthew was doing very
well. My mother brought over the cradle she had as a baby and
I told her to put it away. If I touched it, I know I would kill
Matthew. I felt I had killed Steven and I was going to kill Matthew.
Something I would do, I was convinced, would end his life. It
was not about trying to protect myself from the devastation of
Matthew passing away and trying not to get attached to him by
buying clothes and the setting up the cradle. I was attached to
both of them the instant I saw the double line on the pregnancy
test. This was actually about the fact that if I touched
the clothes meant for him or touched the cradle;
my actions would kill Matthew as they must have killed Steven.
10 days went by. It could have been 10 years if
you went by how it felt. The amnio was done and the result came
in the afternoon at 3PM by phone. Steve answered the phone and
then he screamed in joy. Today, December 7, 1989 would be the
day.
I took a shower and rushed to get dressed. We were
happy but truly paralyzed in shock. They would not let my mother
in to be with me. My emotions were contradicting. As they prepared
me for surgery, I wanted her there. I needed her there. They should
have done anything for me that I asked. I should have known that
the delivery would not be any more compassionate then the prior
pregnancy, which had none.
Time had been my enemy, going so slowly with the
speed to allow the syndrome to progress to kill my son Steven.
Then time continued to be my enemy as Matthew struggled to survive.
With a needle in my back to numb me for the c-section, time showed
it's evil again by reversing it's speed. Now, it would
rob me of the ability to make decisions quickly. But, in reality,
the evil was not the time, but the disease and the lack of desire
to try and save my babies from the doctors. It only felt like
time was against me, but Satan just added that deception for me
while he influenced the disease to flourish and the doctors to
withdrawal.
A whole room of people yelled for me to hurry and
lay down after the shot. The anesthesia would work within a couple
minutes and I was physically paralyzed from my chest down. They
tied my hands in ropes and I begged them not to. So many memories
of my childhood raced back to my mind in this whole experience.
I was reminded of getting my tonsils out at the age of about seven
and being tied to the table. I begged them to take them off me.
God was in the room, because they did.
Within minutes, at 6:10PM, Matthew Steven was born
into a room filled with clapping and laughter. They put him in
a bassinet next to me. I saw a beautiful, blonde curly haired
baby boy and I was in awe. I could not believe that was my son.
Then, at 6:15 PM, Steven James was born into a room filled with
a stark silence, I cried for him, while "Only the Good Die
Young" played on the radio. Why that radio was on in the
first place sickens me.
They brought him into the recovery room. The nurse
held him and told me it was OK to scream. That is all she said.
Now, along with my body, I was paralyzed emotionally. I stared
at her, but nothing could come out. I could not move. I could
not talk. I just wanted her to go away and leave me with my son.
Then, she just walked away with him. The doctor's were rude and
disruptive telling us, "The morgue is here, the morgue is
here." They wanted us to fill out paper work for Steven and
'rap things up quickly'. Not once were any of these details discussed.
We had 10 weeks to talk about them, make these kinds of decisions.
The delivery could have been compassionate, respecting the birth
of both of my twins and honoring them both.
I did not feel joy for Matthew, only relief. It
was finally over. I was off the hook. I was not responsible anymore.
It never should have been my responsibility though. Where were
the doctors? Where were the social workers, the psychiatrists,
and any caregivers that cared? Why did they forget why they entered
there profession? All I know is that they had, they had forgotten.
They may have never had those intentions of truly helping another
human been and saving life to begin with.
They put me in a room with another new mother who
was breastfeeding her baby. The moment I saw her and saw how happy
she was, I knew something was wrong. I was so emotionally gone,
that I knew something was wrong, but I did not know what. I turned
to Steve and said, "I need to see him again, and I want my
own room." I remember him taking me seriously and immediately
said, "OK," standing up, being the best husband and
father in the world and went to make that happen. Because of him,
I got to see my son and kiss every part of him.
They brought Steven into our room, but they never
brought Matthew in. It was always one baby in, one baby out which
only added to my mental confusion. I deserved a lifetime with
my babies. I at least deserved to see and hold them together as
my twins, my beautiful baby boys that I had dreamed of my whole
life. Just another horrific mistake made by unfeeling people.
We only had a Polaroid camera. I have six pictures.
I touched and kissed every part of him. I held him and closed
my eyes. I told him that I would always love him forever, eternal.
I made a promise to him and Matthew that they would be known and remembered
and I would find the answers. I never said good-bye,
only I love you. Just like Steven that brisk September night.
December 7, 1989, two little babies were born. Matthew
Steven and Steven James. Because of these two little boys, the
fight against twin to twin transfusion syndrome began. The Twin
to Twin Transfusion Syndrome Foundation began. A promise kept.
Mary Slaman-Forsythe,
Mommy, Founder and President