Dear Mr. Sparks,
We went in for our 32-week pre-natal check on July 31, 2001. It was
supposed to be a regular appointment, but the nurse mid-wife, Margo, got
concerned when she measured my belly to be 38 cm. I should have been
measuring 32 cm, with being 32 weeks along. Margo then decided to set up
an ultrasound right away to see why I was measuring way off. I was
referred to Dr. Kuhlmann and Dr. Wigton in the PAC (Perinatal Assessment
Center) at Waukesha Memorial Hospital. Their office fit me in their
schedule almost immediately that same day.
Dr. Kuhlmann had the ultrasound probe on my belly for what seemed like
20 minutes, without saying a single word. He took the probe off and
said, "We have a problem. You won't be able to deliver this baby at
Waukesha Memorial Hospital. You're going to have to deliver at
Froedtert, and the baby will have to have surgery after it is born."
(The baby would get the best care at Froedtert/Children's Hospital).
He then proceeded to tell us that the baby had a diaphragmatic hernia,
which is a hole in the diaphragm. The liver, intestines, gall bladder,
and one of the kidneys was being pushed up through the hole into her
chest, which was pushing the heart and one lung over to one side where
it shouldn't have been. The reason why I was measuring larger than
normal was, as they believe, because the baby's esophagus was being
pinched by those organs being pushed up into her chest. She wasn't
able to swallow the amniotic fluid; she was probably just regurgitating
it. When the doctor started explaining the diagnosis of our baby, John
and I were completely shocked. How could this be happening? I started
crying, knowing that our baby would need to have surgery, and not
knowing the outcome of our baby. John and I were terrified. After a
long talk with the doctor, we walked out of the office and down the hall
in complete silence. John and I didn't know what to say to each
other. We were in shock and couldn't believe this was happening to us.
The OB doctor that we were referred to wanted to schedule weekly
ultrasounds until my due date, to keep an eye on how the baby was doing.
There were some other things that the doctors saw in the ultrasounds
following the first one. They saw that she had fluid around one of her
lungs, which in later ultrasounds, disappeared. They saw her making
breathing movements in her belly, and she had hiccups. which both
were very good signs. In another ultrasound, one of her hands was
clenched tight into a fist. The doctor was concerned with the way the
fist looked. (It later turned out to be nothing) Since a diaphragmatic
hernia could signal that there were other problems, such as a genetic
defect, the doctor suggested that we have an amniocentesis done. It
would show if the baby had either Down syndrome, or three other genetic
defects that would be incompatible with life. John and I weren't real
crazy with the idea of doing an amnio because there was nothing that we
would do to the baby, even if it did have Down syndrome or the other
fatal defects. We talked it over and decided to go ahead with the amnio
because we wanted to prepare ourselves for the genetic defects that the
baby might possibly have. We scheduled the amnio for that following
Friday (August 3, 2001).
We went in for the amnio, and we were both pretty nervous. I remember
the nurse taking my blood pressure and heart rate. At the time that she
was taking it, I was pretty upset with emotions, and my blood pressure
read sky high, and my heart rate measured at 148 bpm. They started the
amnio, and the doctor had to cut it short, because my nerves got the
best of me, and nausea kicked in. Luckily, they were able to get enough
fluid. So then the waiting game started for the results. After ten days
that seemed like an eternity, we received good news. There were no
apparent genetic defects with our baby. What relief we felt when we were
told the news!
From then on, my ultrasounds showed that the baby was stable and
growing. At my last ultrasound before the birth, the baby measured to be
approximately 8 lbs., 13 ounces. I was 36 weeks at the
time—technically, I still had 4 more weeks to go. The doctor measured
how much amniotic fluid I had by ultrasound, and it showed that I had 48
cm. of fluid. Just to give you an idea, the high side of normal
measurement for fluid a pregnant woman should have at this time in
pregnancy should be 25 cm. I had almost double the amount of fluid. No
wonder I was so uncomfortable!
Dr. Wigton decided it was time to talk about induction. He and his
partner, Dr. Kuhlmann, talked it over and decided that I should come
into the hospital on Labor Day (of all days!), September 03, 2001. They
were pretty confident that the baby was at a strong enough size to
endure what it was going to go through. The doctors also did not want to
see me get any bigger than I already was, and they also wanted the
birth to be a controlled one. The Friday before induction, the doctor
checked me for dilation, and I had not started dilating yet. His plan,
on Monday night, was to insert a strip to make my cervix softer and to
start the dilation. Then pitocin would follow that. I was pretty
nervous about induction, seeing as I hadn't gone through it with my
other two children, and because I've heard some horror stories about
the pitocin drug. My baby was safe and so alive inside me, and I was so
unsure and scared for what the baby was going to have to go through once
it was born.
Well, Monday came, and I still hadn't packed my suitcase. I remember
packing it just hours before we were ready to go. As we were leaving, I
kissed the kids goodbye (John's parents were staying with them at our
house) and fought back the tears as we left.
I was supposed to be there at 8:00 p.m., but we arrived at 7:30 p.m. I
got checked into my labor and delivery room, got my gown on, and waited.
A nurse came in and checked my cervix, and to my surprise I had dilated
to 2 cm! So because of the dilation, they chose not to insert the
strip, because they figured it would make me deliver in the wee hours of
the night. They wanted to try to make the delivery come during the day
on Tuesday, when they had a full staff that would be more prepared for
the baby's situation. So they went to plan B, which was to start the
pitocin at 3:00 a.m. and go from there. I was able to get a little bit
of rest in before the nurses came in to get my IV and pitocin going. A
couple of hours later, I started feeling the contractions come on. The
contractions were still somewhat bearable, so I did not ask for the
epidural yet. Instead, the nurse gave me some light pain medication.
After that wore off, I thought it was time to ask for the epidural. I
was experiencing severe back labor on my left side, and the contractions
were pretty heavy and concentrated on my front right side. The
anesthesiologist came in and inserted the catheter in my back and
started the medication. I felt relief in about 30 minutes it was
great! (I didn't have any pain medication with Sam and Haley's
birth, so this was heaven!) The epidural went all the way down to my
toes, and my legs became dead weight. I did not like that feeling at
all, so they came in and turned the medication down a bit. There was a
point when I started feeling the back pain and front side pain again, so
they had to come and turn the epidural back up again. The delivery
doctor who was on call, Dr. Newcomer, came in to poke a little hole in
my bag of water. She wanted the water to slowly leak out to give me some
comfort and to maybe get things rolling a little. She checked the
leakage a couple hours later and found that the water wasn't coming
out as much as she wanted it to. So she tried poking another small hole,
only this time, a gush of water came out. The nurses ended up
suctioning the water off the bed, because it was too much water to wrap
up in the chucks (bed pads). They ended up suctioning up approximately 2
liters of amniotic fluid, and I still had more in my uterus that was to
come out later.
Since my water broke, labor came on faster. Before I knew it, the nurses
told me to start pushing. I didn't feel like I was doing anything,
because I didn't have any feeling below my belly. I could only feel
the pressure in my head from pushing.
I pushed the baby out rather quickly. It was a girl, and she was
beautiful. She looked great, but she didn't cry. She was trying to
take breaths but was not able to. After they let me touch her hand, the
doctors whisked her away to her bed on the other side of the room. They
started working on her immediately, putting a breathing tube down her
throat. That was extremely hard to watch. I wanted to see and look at my
baby daughter, but I was forced to turn away, because I just couldn't
handle watching the doctors and nurses work on her like that. They
finally got everything taken care of that they needed to, and the doctor
let me give her a kiss on the cheek before she had to be whisked off
again, only this time down to the NICU (Neonatal Intensive Care Unit).
She had an Apgar score of 2 immediately after she was born, but by ten
minutes, it was up to 9 out of a possible 10. When they took her away, I
told John to go with her, so that one of us would be with her.
John came back a little while later. He told me that she was stable, and
they were just "watching her." He said that she was alert for only a
little while, and Anna grasped his finger when he touched her hand. They
then had to put her on narcotics so she wouldn't fight the breathing
tube. They had to put a chest tube in for her lung. At the time that she
was down in the NICU, they measured her. She was 8 pounds, 7 ounces,
and 22 inches long! (And she was 3 weeks early!)
After John had updated me back in my room, he decided to go down to the
cafe in the hospital to get us both something to eat. I wasn't crazy
about their hospital food, but I was starving! In the meantime, Dr.
Sysyn, one of the neonatologists, came into my room. He proceeded to
tell me that Anna was starting to go downhill. And from the sound in his
voice, it sounded pretty serious. How could this be, when just 30
minutes prior, she was stable and seemed to be OK? I wanted desperately
for John to be there with me at that second. Finally, John came back to
the room, and his smile quickly faded when he saw the look on my face
and saw Dr. Sysyn sitting there next to me. The x-ray that they had
taken of her chest and belly showed that the diaphragmatic hernia was
worse than they thought. In fact, one doctor had told us that it was one
of the worst ones they've ever seen. They had originally thought, by
previous ultrasounds, that there was just a hole in her diaphragm that
was allowing all these organs to be pushed up into the chest, but in
fact there was actually no diaphragm to be found on her right side. And
they also made the discovery that Anna's right lung was not developed,
that it was only tissue. But yet Dr. Sysyn kept saying that they were
"cautiously optimistic." John and I held on to those words.
The next three days were like a roller coaster. We would get some
positive news, but then a short time later, bad news would come our way.
Our emotions were pulled in every direction possible. We had members
from both sides of our family at the hospital almost constantly. They
provided us, as well as each other, with the love and support that we
all needed.
The morning after Anna was born came more bad news. I remember being
asleep after having a rough night with pain, when Dr. Sysyn walked into
our room. It was about 6:00 a.m., and when I saw him, I knew it wasn't
good. I told him, "I was hoping I wouldn't see you this morning,"
meaning it could only be bad news that a neonatologist would come into
my post-partum room at that early hour of the morning. He told us that
she had not been doing very well since 4:00 that morning. The doctors
had decided to put her on ECMO. ECMO is a heart and lung bypass machine
that requires many blood transfusions. What ECMO does, is it pumps the
blood out of the body, circulating it through a machine, and then pumps
it back into the body. Basically, her heart and her one good lung would
be working outside of her little body. We feared the word ECMO. We were
told before she was born that it would be a possibility that she would
have to be placed on ECMO. It's the last thing they can do for
support. If she didn't get through this, then she wouldn't live. One
of the downfalls of ECMO is bleeding in the brain, because of the blood
thinners and coagulants needed to be on to prevent clotting through the
tubes and the machine itself. There were just so many risks. We
didn't want to hear that our daughter was going to be on this type of
support. It was devastating.
After we got done talking with Dr. Sysyn about the procedure, we quickly
got dressed and headed down for the NICU. They were going to transfer
her to the PICU, because of there being more room for the ECMO machine. I
remember going to her while she was still in the NICU. The team of
doctors and nurses were preparing her for the transfer down the hall. It
was a big ordeal. She was hooked up to a lot of machines, and they had
to figure out who was going to take which machine on the transfer. She
was on an oscillator at the time (a breathing machine that went into her
mouth and made her lung pant kind of like a dog- very fast). They had
to take her off of the oscillator for her transfer, so one of the nurses
had to manually pump air into her mouth, by bagging her. They were
finally ready to take her down to the PICU, and I remember John wheeling
me in the wheelchair closely behind her. We later came to find out that
the NICU is only about 1 minute away from the PICU, but when they
transferred her, it seemed to have taken about 10 minutes. They brought
her into her room in the PICU and immediately started hooking her back
up to the machines. They wouldn't let us go into her room, but we
could watch from a short distance. Oh, how I wanted to just take her
away from everyone- every doctor, every nurse, the hospital. It just
seemed like this shouldn't have been happening. She was so little, and
to see all these doctors, nurses and machines all surrounding her was
absolutely overwhelming and devastating.
We were then taken to the waiting room, down a short hall, which kind of
came to be "our" waiting room. With so much family there, we took over
the whole room. We waited for what seemed like an eternity for the
doctors and nurses to get her hooked up to the ECMO machine. It's
actually considered a surgical procedure, where they insert a catheter
into one of the main arteries in her neck. That catheter is what pumps
the blood in and out of her body. The doctor finally came in the waiting
room to tell us that the procedure was done, and that she was on ECMO.
For the next 6 hours or so, she was stable on ECMO, but still in very
critical condition. We were optimistic to hear the word "stable" but
scared to hear the word "critical" in the same sentence. They
started having trouble with her condition and finally realized that
Anna's artery was smaller than they anticipated. So Anna had to go
through another procedure, so that the doctors could insert a smaller
catheter into her artery. This time, it was a couple hours before we
heard anything on how the procedure went. The doctor finally came into
the waiting room, and told us that she was doing much better on the
smaller catheter.
The next 24 hours her blood gases continued to go back up, and her blood
pressure got much better. However, they had to put her back on the
oscillator because the blood wasn't circulating well enough through
her body. So even though her vital signs were looking better, she had to
be on more support. They took her off the paralyzing medication to see
if she would start moving her limbs. They had her on that medication,
along with narcotics, so she wouldn't feel any pain, and so she
wouldn't fight the tubes they had in her. It took her longer than
usual to start "twitching", but eventually she started twitching her
little hands and feet. There were a couple of times she twitched her
hand and foot when I rubbed them. I wanted her so much to wake up and
look at me. I never saw her eyes open on her own. Later on, Jim, her
nurse, had to open her eyes to examine her pupils. That was the only
time I ever saw her eyes. They were deep blue, and so beautiful. She had
gotten so swollen and puffy from the medications and her color most of
the time was reddish/purple. When Jim looked at her eye, he had to pry
it open with two Q-tips. When they were closed, you couldn't even see
her eyelashes, because of how puffy she was. I often wonder if she would
have had long eyelashes like her big sister.
Thursday came, and I was discharged from the hospital. We had decided to
stay close to the hospital that night, seeing as how we lived an hour
away. We set up our room over at the Ronald McDonald House, which was
right across the street from the hospital. We decided to have the kids
stay with us, and they had a great time. There was so much for them to
do there. At around 4:00 Friday morning, I woke up and decided to call
over to Anna's room in the PICU to see how her night went. Her nurse,
Jim, told me she was still stable and all her vital signs looked good.
He also said that she would have the ultrasound of her brain to check
for bleeding around 8:00 that morning. I went back to bed, and we all
got up and got ready a couple of hours later. We headed over to the
hospital, and I remember walking into her room and getting excited over
Anna's color. She was no longer purplish, and her color was normal! I
was so happy, but that emotion quickly changed when I saw the look on
Jim's face when I asked him how the ultrasound went. He wouldn't
tell me about the ultrasound. All he could say was that Dr. Luethner
would be coming into her room rather shortly to speak to us. I knew
right away from the look on Jim's face that it wasn't good. I
immediately broke down. I knew this must be it.
Soon after that, a team of nurses and doctors, including Dr. Leuthner,
came into Anna's room. They asked us to go with them down the hall to a
conference room. I recall that long walk down the short hallway,
following the team. I cried, knowing that they were going to tell us
that they found bleeding on Anna's brain. I couldn't believe it was
coming to this.
We got into the room, and they had told us what we had feared and
dreaded the most. John held my hand tight, as Dr. Leuthner held my other
hand. They did indeed find bleeding on her brain stem, which was
obviously very serious. We had made it known to Dr. Leuthner earlier
that if she did have bleeding on the brain from ECMO, that we wanted to
pull her off the support. We didn't want to prolong her life in
suffering, pain, and full of tubes. He knew what we wanted to do, but he
waited to hear our final decision. After we came to from our shock of
reality in the conference room, we told him that we wanted to
immediately call our family and our Pastor, to get them down to the
hospital to say their goodbyes to Anna. We had decided that we were
going to pull her off support that afternoon. We figured it would be
harder the longer we waited.
By early afternoon, all the family was at the hospital and taking turns
going into Anna's room to say goodbye. (The relatives that were there
at the hospital included John's parents, my parents, my grandparents,
my sister and brother-in-law, my Aunt Sally, John's sister, her
husband, and their 4 children.)
I wasn't in the emotional state of mind to be with anyone at that
time. I just wanted to be by myself with my husband and my children. I
couldn't look into anyone's eyes, as they came back into the waiting
room from seeing Anna. There was a small room right off of the waiting
room that I stayed in. John would go back and forth between both rooms,
but all I could do was just sit there on the couch. As everyone made
their visits, two by two, it seemed like hours, which in reality was
probably only an hour. I remember goofing around with the kids in that
room for about 5 minutes. John was doing "airplane" with them, and all
four of us were laughing pretty hard. It felt so good to smile and
laugh. But as quickly as the "goofing off" started, it quickly faded
when we brought ourselves back to reality. When all the relatives were
done seeing her, we decided it was our time to go in for our last
goodbye. We took Sam and Haley in with us. Up to this point, we still
had never held our precious baby.
Our plan was to have the kids hold her first, then have them go back
into the waiting room with family. Then John and I would hold her, and
we would then take her off the machine while we were holding her.
That's exactly what we did.
We walked into her room and told Jim, her nurse, that we were ready to
hold her. At that time, Pastor Steve walked into the room. It was such a
relief to see him. Up to this point, we weren't sure that we were
going to be able to have him there with us because the hospital chaplain
wasn't able to get a hold of him all day. We had wanted him to be
with us as we said our goodbye.
It was a big ordeal to prep Anna for us to hold her. They took out all
of her tubes, except the ECMO machine. I remember the doctor's and
nurses coming in and working together. They took her catheter, her chest
tube, her IV's, and her breathing tubes all out before they gave her
to us. It was really hard watching that, realizing that this was it.
There was no turning back, and our last goodbye had started.
By this point in the afternoon, Haley was getting pretty cranky and
tired. She had asked to hold Anna first, so we let her be the first one.
She was so cute holding her baby sister for the first time. She kept
looking around the room to see if anyone was watching her. Uncle Ryan
and Aunt Pam were in the room, taking pictures and videotaping. I
remember Haley just looking down and staring at Anna for long periods of
time. Then we decided it was Sam's turn. Sam was such a proud big
brother. He also stared at Anna for long periods of time. He adored this
baby way before she was even born. During the time that the kids were
holding her, a lady from the hospital that does clay imprints of hands
and feet, came into the room. She took an imprint of each hand and foot.
Sam and Haley helped by pressing Anna's feet and hands down into the
clay. The kids thought it was really neat that they could help her with
the imprints. Haley wanted to hold Anna one more time after Sam's
turn.
After they were done holding her, the kids went back into the waiting
room with the rest of our family. I let John hold her next. He held her
for quite some time, and then he gave her to me, with the nurses'
help. We still had to be extremely gentle with Anna, with the ECMO tubes
still in her neck. It was really hard holding her. She felt heavier
than I expected. This was the first time holding her, and I wanted it to
be under better circumstances. It shouldn't have been this way. I
just wanted to walk out of that hospital room with her healthy little
body in my arms. But it wasn't that way, and I had to accept that. I
loved holding my daughter. I just wish she could've looked up into my
eyes and seen what her mommy looked like. She never saw me. We never
looked into each others eyes. I think that's one of the things that
hurts me the most, along with many obvious other things. I remember
kissing her little rose bud lips, with her little tongue sticking out,
and they felt so cool, smooth, and moist. After my turn holding her, we
decided it was time to take her off the ECMO. Pastor Steve was right
there along with us, offering emotional and spiritual support for Anna
and us. He performed a beautiful, small prayer service for Anna.
The nurses and doctors came in and turned the machine off. One of the
doctors, Dr. Ganayem, came over almost immediately and said to us,
"She's gone." I will never forget those words. Anna turned blue almost
instantly after they turned off the machine. I had told myself
beforehand that I wouldn't be able to emotionally handle holding her
after she passed away. But now, at this point, I wasn't able to let
her go. We held her for what seemed to be about 30 minutes after she was
"gone". She made some small hiccup sounds for a couple of minutes,
which we were told was a reflux reaction from the hernia. I remember
thinking that she was trying to breathe! My poor baby. I really hope
that wasn't the case, that the doctors were trying to cover it up, so
we wouldn't be more upset. John and I reluctantly gave her back to the
nurses, and we went back to the waiting room where our family was
waiting for us. It was really hard facing them with the thought that she
was now gone. We all hugged, and Pastor Steve led another small prayer
service.
We were only in the waiting room for about 5 minutes, when Dr. Leuthner
came in the waiting room and whispered to John and I, "Um, she still has
a heartbeat. Would you like to hold her again?" Of course, we wanted to
hold her again! Part of her was still alive! I remember feeling really
awful, that we had put her down when we thought she was gone, but she
really wasn't. I remember feeling really bad that she was alone when
her heart was still beating. We were given the choice of holding Anna
back in her room or holding her in the waiting room, so everyone could
see her one more time. We chose to hold her in the waiting room. I
remember telling everyone that if they needed to leave, they could. I
wasn't sure how they would be able to handle seeing her, because of
her color change. John and I held her one more time, and then Sam held
her for the last 30 minutes of her life. At this time, she wasn't
breathing. It was just her heart that kept beating. Dr. Leuthner came
into the waiting room about every 5 minutes to check her heartbeat. Each
time he came in, Anna's heartbeat would be slower and more faint. She
just didn't want to leave us! She tried to hang on as long as she
could. Dr. Leuthner came in the last time to check her heart, and he
looked up into our eyes and told us that there was no more heartbeat. At
this time, Sam was still holding her. He didn't want to let her go.
After a couple minutes, we gave her back to Jim, her nurse. I remember
the look in his eyes when we gave her to him. We could tell that he felt
so bad for Anna and us. We hugged him and thanked him for all his
compassion, care, and concern that he had for Anna and our family. We
thanked him for taking such great care of Anna. That was the last time
we saw our sweet baby Anna.
We then had a funeral to prepare for. I remember one of the doctors that
we had a consultation with before Anna was born, said that planning a
funeral was something that could be a possibility. I remember thinking, a
funeral? That couldn't possibly happen. But it did. Here we were,
preparing it. We had a beautiful service for her, celebrating her short,
precious life here on earth. Oh, and it was precious, as was she. We
had the service videotaped, which I am thankful for, because it was
quite a blur in my mind. I am so thankful for all the prayers, support,
and love we received through this difficult time. We wouldn't have
been able to get through it as well as we did without it.
Sincerely,
Anna's mom, Kelley Piasecki (Wisconsin)
