My 5th pregnancy, 4th child
(one miscarriage), was not exactly planned. Half of
me was excited and half of me was wondering what I had
done! My other three children were 5, 3 and 11 months.
Many thoughts raced through my mind. My biggest fear
was bringing a baby home to such a full house and my
youngest being so small. I did not know how I was going
to divide my time with work, kids, & school between
2 children less than 1 _ years apart. I had just been
done breastfeeding our smallest less than 3 months prior
to finding out the pregnancy news and I was going to
start all over again. Hindsight, my biggest fear should
have been not bringing a baby home at all.
The pregnancy began and the
first 20 weeks flew by. I felt like I was gaining weight
normally and a few weeks before I hit the half way mark,
I was starting to adjust to the fact that we were going
to have another baby. I had many conversations with
my husband questioning how different I had felt toward
this baby. It is nothing I could pinpoint, but I remember
telling him how I could just not get attached and the
bonding was feeling different. We both thought that
because we did not plan this, it was just going to take
time and that when the baby was in my arms bonding would
be natural. I now think it was a mother’s intuition
and a defense mechanism built in takes over helping
you to guard your heart. I would go to sleep waiting
for a dream each night about my baby. With my other
children I dreamt many dreams and each dream would accurately
reveal the sex of our child. I could not wait to see
if my intuition was correct and reveal that our baby
was our first boy.
At 20 weeks – August
of 2007, we went for our first ultra sound. We anticipated
hearing the sex of our baby. Would this be our first
boy or would we get 4 girls. Many people insisted and
hoped that we were having a boy, I on the other hand
could not see myself a mom to anything but girls. I
also figured that God had given us this baby when we
hadn’t asked for it and we were happy –
he must know what he’s doing should he give us
Over the years, we have had
many ultrasounds - this is my 5th pregnancy, so we have
developed a small relationship with the ex-ray technician
in Crookston, and within minutes we could tell something
was not right. All she could tell us is that we need
to see a dr. right away and knew Dr. Kanten, my regular
OB, was out of town. Fatality had not even entered my
head. Tears of fear began to flow and I questioned my
ability to care for a child with special needs when
I have a 1 year old at home and 2 others who need me.
After about an hour of waiting,
Kanten's replacement sat down and told us that this
baby is not viable and will not survive. He said we
needed to go to a different hospital to induce labor
and delivery and the baby will die. Crookston could
not perform this because of the high risk of bleeding.
The first this I told him is "I can't kill my baby!"
Immediate devastation and terror filled my mind and
I cried uncontrollably on Aaron’s shoulder. The
pain was indescribable. The shock was unbearable. There
are no words to describe how your mind thinks with this
news. I could actually feel my heart be ripped from
my chest and that would have felt better than the pain
I was feeling. This was my darkest hour through the
whole pregnancy. Utter darkness! The doctor did not
tell me that our baby had Anencephaly, he just said
that he did not have a head and could not really clearly
see if his facial features were in tact. He said something
about possibly having one eye.
We were left with a big decision
to make. My heart knew the whole time what the “right”
thing to do was. My body was saying another. I wanted
out of this pregnancy in the most desperate way. I sought
out people who would tell me that I did not need to
carry out this pregnancy and that it would be better
for me and my family to terminate before I started to
I researched throughout the
night and came across many websites. Some pictures were
horrifying. I now realize that the horrifying pictures
were shown of babies less than 20 weeks gestation. The
babies at full term were shown with hats and were no
different than any other baby. I could not understand
how some of these moms who carried their babies to term
could receive any satisfaction or any blessing from
a doomed pregnancy.
Our priest referred us to a
priest who specializes in ethical medicine named Father
Bob Schreiner. My husband and I were determined to follow
the churches guidance and would obey the direction of
the priest I walked into his office begging for him
to tell me that it was okay to terminate this pregnancy
or as I called it “induce labor early”.
I explained to him how I was merely life support for
this baby who had been implied to me by our doctor’s
replacement as “not human”.
Father Bob has actually walked
this path with many parents. He listened intently to
my sorrow and calmly explained that the church, in this
circumstance, feels that at 33 weeks would be a proper
benchmark to induce labor and delivery. The reason for
this is that any healthy baby will survive a delivery
at 33 weeks, anything prior is not likely and very risky
for death. The church feels that this baby is meant
to die from Anencephaly. Anything prior to 33 weeks
would be a different cause of death. At 33 weeks, the
risk of carrying this baby increases for me, which is
also another reason for that benchmark.
My arguing with him did not
change the churches standpoint. I told him how I felt
and that I was praying for God to take this baby to
heaven now, at his will. He shared that even Jesus pleaded
with God for a different way before he died and Jesus
had the free will to walk away, but he chose not to.
He felt that we were chosen by God to bear this cross
and in God's eyes, this baby is nothing less that perfect.
He disagreed with the Dr. we saw and said that right
now, this baby is viable. It is completely alive and
with a soul but just imperfect from a medical science
standpoint. He also used the example that even Mary
knew her baby was born to die, just like ours. He promised
that our baby will be of great things, even though we
may not see it short term - maybe one day our children
will come to us and say what a valuable lesson this
ordeal has taught them and this is shaping their character
for what they are to be faced with. The point was that
we are not meant to see the bigger picture, we are supposed
to let our faith guide us. At this point, it is not
what is best for us, it is what is best for this baby
and this baby is viable inside me. At 33 weeks, it is
possible, depending on the brainstem that should be
baby not be born still. I could be able to nurse the
baby because the brainstem will create involuntary sucking.
The baby could squeeze our hand and maybe cry. Some
babies can live for a few days, but most die within
a couple of hours, completely painless.
Our hours of conversation confirmed
what my heart was telling me. I knew what I had to do
and hoped that in the end it was what I wanted to do.
I knew that this was a decision I could be proud of
and have no regrets. I would carry this baby to at least
This pregnancy progressed and
time slowly became my friend. My regular doctor took
over and handled our situation with care and concern.
Each week something would happen that would get me through
to the next. During weeks 20-24 I experienced minor
contractions that gave me hope for the end. When that
surpassed I began to find hope through praying for a
miracle. By 28 weeks, I became depressed and unhappy.
Polyhydramnios began to set
in and by 31-32 weeks I was miserable. I have a history
of tacacardia during pregnancy and sure enough I was
not spared those symptoms during this pregnancy. Walking
up the stairs was physically exhausting and I needed
to stop to catch my breath at the top. By noon, I crawled
to my bed for a nap only to wake up 3 hours later and
still be tired. I was given Labatelol to relieve the
tacacardia symptoms, which significantly helped.
At 32 weeks our church offered
to give us a Baby Prayer shower. As I listened to their
proposal about what they’d like to do for us,
all I could do was sob. What an honor! I’d get
to share my child’s life and lift him up in prayer
just right before he needs it the most. My baby was
going to get a baby shower! My heart has never been
so touch at such a thoughtful and innovative idea.
We nervously arrived at our
prayer shower for Austin, not knowing what to expect.
We first walked into a peaceful church lit by candles
and soft music heard in the background. They led us
downstairs where an overwhelming display of celebration
was to take place. To be honest it was decorated exactly
how I picture his funeral celebration to be. Blue and
white balloons were scattered everywhere. Blue was very
different for me to see. With 3 girls, blue is a bit
foreign, but such a refreshing change of pace! After
a few minutes of visiting with our families, we were
led back upstairs to the front pew to await the service.
Walking in the pew, it was evident
that the Holy Spirit was at it’s best. Although
many people shed tears at the song of “Road to
Bittersweet”, I enjoyed watching Lexi and Aubree
sing the words to Austin’s song that they knew
so well. Many prayers appeared in perfect words on the
screen. All in unison, the full church was asked to
pray silently specific prayers relating to our baby.
Not only were prayers offered for Austin, but the grandmas,
grandpas, his sisters and a specific prayer was offered
for his doctors and nursing staff. Each slide lasted
about 2 minutes and most of the specific prayers were
followed by structured prayers. For example, when they
asked for prayers for Aaron and the Grandpas, the Lord’s
Prayer was displayed as a suggestion for people to pray.
A calming surrounded me and comfort was all I could
feel. I could hear sniffles in the background. I snuck
a peak behind me and saw the church filled with standing
room only! I saw lots of people with lots of tears.
People genuinely cared. The most joy I felt was knowing
that Austin’s life was of value, not just to me
and Aaron but to others too. His life was not minimized
like I would sometimes feel. At this moment I was so
very proud to be Austin’s mom and to shout that
he was my little boy.
We were just showered with
hugs and kind words. Our kids ran around like crazy
people after the service enjoying the extra, well deserved
attention. Not only did we need this, but our kids needed
it too. They were able to tell people what was wrong
with Austin and how it felt from their point of view.
Finally, an appropriate moment for them to talk about
their brother with others! This shower came at just
the right moment for us, and we couldn’t be more
grateful to share him with over 200 people who respect
his life as much as we do. This shower gave me the strength
to continue this pregnancy beyond our benchmark goal
of 33 weeks.
At 33 weeks, Aaron and I decided to give Austin’s
lungs a bit more time to develop. We had come this far
determined that his cause of death would not be on our
hands. I knew that I could make it a couple of more
weeks. I was induced at 35 weeks, but Austin was not
ready to be born. By the end of the 1st induction process,
I would only dilate to 1 _ cm. I nervously went back
the next week expecting a long, hard, tough labor. I
began to think I’d be pregnant forever without
the functionality of his pituitary gland. The next week
though, the labor was long, but very tolerable, until
the doctor broke my water at about 9:30 – 10 p.m.
at which point I was dilated to about 7 cm. After my
water was broken and without exaggeration gallons of
water poured out, there was no turning back and pain
was excruciating, just like any other baby.
Austin was born at 10:44 p.m.
and was born alive. I was so worried that he'd struggle.
He didn't one bit. He was born with a heartbeat but
not one single bit of repertory effort was made on his
part. They placed him in my arms and his eyes were big
and wide and stared directly into mine. He lived for
11 minutes and we have every second on video tape. His
eyes did not blink once and he did not cry. My sister
(who was video taping) said she thought he looked at
me in complete awe and she felt in his stare how much
he loved me. I placed my cheek against his warm cheek
and held his sweet fingers. He was so weak. For not
one single second did I beg for him to stay. It was
peaceful and there was an unexplainable calming in the
room. Had they not told me he was alive, I'd have never
known. It was just my job to be there for him as he
went onto the next place and take all my love with him.
Before he was born, I did not
know what I should expect visually when I would first
see my baby. I saw him and I did notice his anomaly
(some moms have said they did not notice and they only
saw their beautiful baby). Directly above where his
eyebrows would have been was flat and tapered back.
As I held him outwardly, the back of his head fit in
the palm of my hand. His eyes were big and they were
bulging – but they were beautifully big, in fact
all of his features were big and I can only assume they
appeared that way because his head was so small. With
his hat on they did not appear larger than any other
baby. His lips were the most beautiful lips I had ever
seen. His face, from birth and I assume the lack of
oxygen was very bruised and blue. Austin’s ears
were folded in half, which were my husband’s favorite
feature because they were so unique! The back of his
head all the way down to where his brain stem started
about _ inch above his neck line was exposed tissue
of some sort and was red in color, but not weeping blood
(even though his little hat has blood stains on it which
I will treasure forever!) The open lesion was about
the size of the palm of my hand. Like I said, I noticed
his anomaly, but it did not change one bit how I felt
about him. To me it was like a scrape on my other children’s
face, yeah I would notice it, but it doesn’t change
one bit how I feel about them! I also had to take a
peak under his diaper. With 3 girls at home the genitals
were a bit of a curiosity to me. Yep, we had a boy!
Because he was lacking a pituitary gland, the hormones
that create reproductive organs was not functioning
so his genitals did not grow normally, but it was plain
to see that we have a son!
When the doctor was finished
with me and after Austin had passed, we allowed all
of our family to be apart of his birth and hold him
and love him and cherish his memory. We took photos
of Austin with everyone who was there. At about 1 a.m.
our family brought my two older girls to meet their
brother (the doctor thought that morning may be too
late for a good visual experience with the kids). What
a beautiful memory and my favorite part of Austin’s
birth. The innocence of our girls was breathtaking.
They held him, kissed him and loved him wholeheartedly
and unconditionally. The feeling I had watching my girls
with their new brother was everything I could have hoped
for him and more. I didn’t want their time with
him to end but the lack of sleep got to me and by 3
a.m., it was time for them to say goodbye to their brother.
By morning, the nurses brought Austin back to me (they
had made foot molds, hand molds, foot prints, hair cuts,
throughout the night.) and I hardly recognized him.
He had changed so much and I knew he was completely
gone. He hardly looked like the baby I had just given
birth to and his body was so cold. I can vividly remember
that the lips that were so full the night before, were
now narrow and lacking life. I placed him in his crib
and awaited the arrival of the funeral director. I’d
look at his crib and I would cry so sad that he wasn’t
in my arms crying, fussing, or nursing. The funeral
director prayed with us and allowed Aaron to gently
place Austin in his new crib, a white 2 foot casket.
I cried as I watched him close the lid and wheel him
We had a small funeral for him
with family and a few friends. I opted out for the large
funeral because hormonally I was just not ready for
the mounds of people who would have come. I desperately
wanted them, their hugs and their love, but I just wasn’t
ready to let my guard down and was so afraid to have
people see me fall apart. I had been so strong and was
so proud of how strong I was, allowing people into that
side was so frightening for me. That day, I cried for
my baby in sorrow, but there is no heartache compared
to the day the doctor told me that Austin was “Not
Viable”. At his funeral, I was crying for me and
that was only half the heartache. When I found out his
diagnosis, I cried for him and for me, terrified for
both of us. I did not need to worry about Austin anymore
and my faith assured me of that.
I can say that I have 4 regrets:
not bringing my youngest child there to meet him and
take a photo with him (she was 1 _ at the time and it
was 1 a.m.); not allowing our nieces and nephews (Austin’s
cousins) to meet and hold him. Not only would that have
been closure for them, but our kids love to talk about
him and it would have given our children the opportunity
to show him off to people they could relate to and who
loved Austin equally; not taking a photo of Austin naked
while he lay on his belly (every baby deserves a butt
shot); and finally not taking a photo of the altar at
his funeral. The altar was beautiful.
Throughout the pregnancy and
shortly after his birth, there were many well-meaning
people who just wanted to help. Yes we heard the comments:
“Thank God for your other three”, or “You
can still have more, your young,” or “Wouldn’t
this have been easier at 20 weeks?” or “How
sad, your only boy.” or “I bet you can’t
wait for this to be over.” These comments never
bothered me once. I noticed them, but I also understood
that people are kind and they are not lying awake at
night trying to think of a way to hurt the mother of
a dying child. Most of the time, they just didn’t
know what to say and they were trying too hard to make
a bad situation better. The fact was that there was
nothing they could say to make it all better, but there
was really nothing that could be said to make it worse
The grief process will take
time they tell me. I am okay with that. I don’t
ever want to forget about Austin and this journey he’s
brought me through. I believe that we began to grieve
for him the day we found out his diagnosis and that
was a blessing. We were able to grieve for him and still
have him with us, completely healthy, happy and secure.
I await and pray every night for a dream sent by Austin.
I can’t wait for that reassurance that he is okay
without me, even though my faith tells me he is.
For other mom’s just starting
their journey, I am sorry for you. The one thing that
I didn’t realize until it was nearly over was
that we were focusing on what Austin didn’t have.
All the while, we should have been focusing on what
he did have and what he did bring to us. He had everything
my other children had, but most importantly, his soul
was just as beautiful and perfect. I can’t wait
to get to know that beautiful soul one day! His life,
no matter how short or how drug out the pregnancy seemed
to get, it was still his life and he was entitled to
it and as a mom it was my job and honor to be there
for him. Now, there isn’t a day that goes by where
I do not hear of Austin’s name in thanksgiving,
often by strangers or acquaintances. He has touched
the hearts of many, even though he was disadvantaged.
In my lifetime, I hope to have reached as many people
as this little boy. Our blessings because of Austin
are uncountable and I am sure that most are unnoticed
and blessings continue will pour out because of him
throughout my lifetime. Right now (and it’s only
been 4 weeks since his birth) I can say that my marriage
is stronger and a deeper friendship has evolved (most
days), I am more compassionate, I am taking less things
for granted with my other children, my interest to help
others in Austin’s memory is phenomenal, our extended
families have grown unexpectedly closer, and I am yearning
a stronger faith life.
I have often said to many, if
God gave me the choice to have Austin with Anencephaly
or no Austin at all and to never have known the heartache,
I’d choose Austin with Anencephaly. I have the
hope that when I get to Heaven, he will greet me with
open arms saying “Mommy, I’ve been waiting
to Anencephaly 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.