I would like to share with you a story
of the life of our daughter Abigail Renee Wheat. Throughout
our marriage, my wife and I had discussed several times the
idea of having children. In September of 2001, we decided
that we were ready to try to start a family. On February 28th
2002, after several pregnancy tests, we discovered that we
were expecting our first baby. Katie, my wife, called our
Nurse Midwife to let her know of the results. She asked Katie
if she wanted to come in and get her blood drawn to verify
the results. Katie and Jessie (her mother) went to the hospital
that evening to have her blood drawn at the lab. The nurse
midwife called her back within an hour, at 10:30pm, to let
her know that the results were positive. That was the most
incredible feeling of elation and joy.
We were both so excited about the
results that we began immediately looking for baby names and
bedroom items. We must have spent hours on end at Babies ‘R
Us. We had no problem deciding on a boy’s name. The
girl’s name, however, was a completely different story.
Finally, one night Katie was just rattling names off of the
top of her head (or out of a book, I’m not quite sure).
She happened to say the name Abigail. It seemed to strike
a chord, so that was it. We had decided. We had both always
liked the name Renee, and it seemed a natural fit for a middle
name. That first couple of months was the happiest of our
lives. We bought one of those “home use” ultrasound
listening devices and used it nearly every night on the off
chance that we might hear heart tones at home.
At 16 weeks, during Katie’s
routine monthly check-up, the Nurse Midwife drew blood for
an AFP (alpha-fetoprotein) test. This was explained as just
“one of those routine tests” that everyone has
drawn. We did not think much of it at the time. About a week
later, in May of 2002, Katie received a phone call from our
Nurse Midwife. The AFP results had come back abnormally. The
results indicated an increased risk for Trisomy 18, also known
as Edward’s syndrome. I was at work that night, so Katie
immediately called her mother, Jessie. After calling me at
work to tell me the results, and telling me where she was
going, she left to meet her mother. They met at the hospital
where Jessie works as a maternal-child nurse. They perused
some of the maternity books available on the floor at the
hospital only to find very grim statistics. Approximately
90% of babies with Full Trisomy 18 die before birth. Of those
that are born alive, only 50% will live for one month, with
only 10% surviving for a full year.
I began my own search to find out
about Trisomy 18. I was working as a nurse on the orthopedic
floor of the hospital. That night happened to be very quiet,
so I took an early lunch and hit the computers. I found article
after article relating to Trisomy 18. Unfortunately, everything
I found was written (and rightly so, considering that I work
in a hospital) for medical professionals, not expectant parents.
With each new article, and each identical set of statistics,
I grew more frantic and uncertain.
We were referred to a perinatologist
for a level 3 ultrasound. Another bit of information we had
found, and would find over the next few days, is that there
are certain physical characteristics that are extremely common
with Edward’s syndrome. Some of these included physical
cardiac (heart) abnormalities, club feet, and clenched fists
with overlapping fingers. It was expected that these would
be visible on this extremely detailed ultrasound to help either
confirm or dispute the AFP test results. We contacted the
perinatal center to set up an appointment and were told that
the first available appointment was one week later. That was
an incredibly long seven days.
During the course of the ultrasound,
in early June, 2002, the ultrasound technologist was unable
to obtain the views he was looking for of our child’s
heart. We were told that our first child would be a daughter.
None of the other physical characteristics were visible, but
we were told that the cardiac abnormalities were the most
common. Because we were unable to visualize the heart the
way the doctor wanted, we were offered the choice of rescheduling
a month later, when the child would be larger, or doing an
amniocentesis at the office that day.
The genetic counselor told us that
if we wanted to terminate the pregnancy, we needed to find
out as soon as possible. Having discussed this with Katie
prior to this appointment, we had decided that abortion was
not an option. At the time, we chose not to do the amniocentesis
because none of the other physical signs were seen. We were
rescheduled for another level 3 ultrasound one month later.
That month between visits seemed
to last nearly a lifetime. During that time, Katie and I,
along with both her mother and mine, did quite a bit more
research about Edward’s syndrome. By the time the day
arrived for our follow-up ultrasound, Katie and I had convinced
ourselves that the AFP results must have been inaccurate.
The physical distinctions were so common that we were sure
our daughter must have been all right.
During that second ultrasound, we
were seen by a different ultrasound technologist. Very little
was said throughout the process. While I am a critical care
nurse, I do not read ultrasounds, so I was just as in the
dark as Katie. The ultrasound tech. left to get the doctor
because she said that she was again having difficulties obtaining
the desired views. When we asked if there were any visible
problems, we were told that if there were, they would have
Shortly thereafter, the doctor and
ultrasound tech. returned. The doctor watched while the tech.
again tried to find the proper views. Several measurements
were made on the screen, but no information was given to us
during this process. The doctor finally informed us that there
were some physical signs present of trisomy 18. Abigail, our
daughter, had a large ventricular-septal defect (VSD), pulmonary
artery defect (PAD), and was a week and a half behind her
expected size. A ventricular-septal defect is a hole in the
wall between the two bottom chambers of the heart. The pulmonary
artery defect was a hardening a loss of elasticity of the
pulmonary artery – the blood vessel that carries blood
from the heart to be oxygenated in the lungs. We knew from
our research that these are all characteristic of trisomy
We decided to go ahead at this time
with the amniocentesis to verify the diagnosis. We knew that
a confirmed trisomy 18 diagnosis would not affect our actions,
but we needed to know what to expect. The procedure went without
complication, and we were told that we should have results
in 7 to 10 days.
I had no idea that ten days could
last so long. We called the perinatal center twice during
that time to find out if they had received the results yet.
We knew that, no matter what happened, God would take care
of us. Even with this knowledge, and our faith, we still spent
most of those nights filled with tears, and lacking in sleep.
On July 8, 2002, we received the news
that we had been dreading. Abigail Renee, our first child,
did have Edward’s syndrome. Our first thought was, “Why?”
We could not understand how this could happen to us. We had
wanted this child so badly. Katie had taken great care of
herself during the entire time of our pregnancy. She stopped
drinking caffeine, started eating healthier, and never missed
her prenatal vitamins. We just couldn’t understand what
had happened. To this day, we do not, and probably never will,
have those answers. The simple fact, looking back, is that
it happened. There is never an answer to “why?”
We spent the next couple of weeks in a daze. We had to tell
all of our family and friends the news. All of my friends
that I had just graduated with in June had thrown us a baby
shower. We had to tell them as well. We also called our Nurse
Midwife, Peggy, to let her know that we had found out. She
was very supportive of our decisions throughout this process,
and was always there when we needed her.
We also returned to the internet
looking for more information about what to expect. During
the course of this search, we found the website SOFT (Support
Organization for Trisomy 13, 18 and related disorders). We
also stumbled across Trisomy Online’s website. It was
here that we found the support group listservs. These were
basically email groups/bulletin boards dedicated to parents
expecting, raising, or grieving lost children with trisomy
These listserv support groups were
an incredible help. We had no idea what to expect or what
we were going to go through. Being able to talk to other parents
who were living through this, from around the world, was such
an incredible relief. We were not alone. We also were blessed
to have a very supportive family that checked on us frequently
to ensure that we were okay.
The pregnancy progressed for about
another 4 weeks. On August 3rd, Katie’s birthday, we
paged Peggy because Katie had not felt much fetal movement
for the past day or so. We met Peggy at the hospital, because
her office is closed on Saturdays. She checked for fetal heart
tones, and we were told that they were fine. We listened intently
and enjoyed every second of hearing those heartbeats. As it
would turn out, it would be the last time we heard them.
Katie and I spent that weekend on
the Oregon coast. We stayed at a couple of lovely bed and
breakfasts and enjoyed a wonderful few days for Katie’s
birthday. The following Thursday, August 8, 2002, was our
regularly scheduled monthly appointment. At that visit, Peggy,
the nurse midwife, was unable to locate fetal heart tones.
She called me immediately, because I had gone to Tae Kwon
Do class and missed this one visit. This was the only visit
I did not attend.
Katie was sent over to the hospital
(approximately 200 feet across the parking lot) for an ultrasound.
She was met by her mother, Jessie, who was working at the
time in the maternity ward. I headed straight to the hospital
and met them both just before the ultrasound was getting ready
to start. This ultrasound confirmed our worst fears. Our angel,
Abigail, had already gained her wings.
We were sent upstairs to the maternity
department for labor to be induced. This started at 6:00pm
on August 8th. I sat awake throughout the night, watching
at Katie slept fitfully with the help of an epidural. At around
9:30am the next morning, Katie said that she felt an urge
to “push”. Peggy was called in, as was Jessie
and Katie’s nurse. After only a few pushes, Abigail
entered the world at 10:04 am on August 9th, 2002. She weighed
1lb 7.6oz and measured 11 1⁄2 inches tall. The most
difficult part of the delivery was having Katie push, and
not hearing a cry.
Nonetheless, we were able to hold
Abby and bond with her. That evening, Katie’s father
flew in from Indiana, as did her best friend, Leigh, and my
sister. Jessie and I went to the funeral home that afternoon
to start making arrangements. Katie stayed at the hospital,
holding Abigail, waiting on our family, and recovering herself.
Late that night, after all of the
family that had arrived was able to hold Abigail, we placed
her body back in the nurse’s care. The nurse then made
arrangements for her to be transferred to the funeral home
for services. My mother, aunt, and cousin arrived the next
The service was held on August 12,
2002 at 10:00am. One of our pastors read scripture and a church
member sang a couple of songs – including “Jesus
loves me”, a favorite children’s hymn. We also
released balloons during the service for several family members
that were unable to be here.
Our family returned to Indiana later
during that week. That was when the hardest times started.
After all of our family, friends, and support had left our
house, we were left with an empty, quiet house and too much
time to think. We had already decorated Abby’s room
and painted the walls with butterflies. The door to her room
had to be shut for a while, because neither of us was able
to deal with it.
In the time since her delivery and
burial, Abigail has been sorely missed. Katie and I had been
trying to have a child and I think that made it even harder.
We have since continued to communicate with other parents
via the listservs. Katie even created her first webpage, dedicated
Without the support of our family
and friends, the wonderful support of our Nurse Midwife, Peggy,
and our faith in God, Katie and I would never have made it
through this trying time. We have managed to come through
the other side of this dark time even closer than before.
We have decided recently to try to have another child. We
know that, God willing, we will have a child-filled family
some day. However, Abigail Renee Wheat will always be our
first child, daughter, and angel.
In memory of our daughter, Katie
and I began a non-profit organization in October 2003. To
learn more about it, please visit A
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.