I have to start this story
nearly five years before Benedict's birth, when my sister
and her husband discovered at their routine 18 week
ultrasound that their first child was going to die.
Thomas Walter had anencephaly, a fatal neural
tube defect where the top of the spinal column fails
to close. We were all devastated, especially Clare and
Tom. They decided, against some of the advice
they were given, to lovingly carry Thomas Walter
to term - to cherish him for the short time he would
be with them. Labour was induced at 37 weeks and
Thomas Walter came into the world. He lived for 17 1⁄2
hours, in which time he was visited and held by many
friends and most of his aunties and uncles, including
Mark and myself.
Mark and I married less than
two months after Thomas Walter's birth and death.
Pretty soon we were expecting our own first baby. I
was very nervous when we had our ultrasound. Fortunately
everything was fine and we had a beautiful baby
girl, Cecilia. Just over two years later Sebastian was
born. In 2000, we were very excited to be expecting
our third child, the due date was set for the
17th of July, 2001.
Leading up to the 18 week ultrasound
I was feeling very uneasy. I hadn't really felt any
movement, which was odd, because I had felt Sebastian
move before 12 weeks. Generally, I am not a worrier,
but I just couldn't shake this feeling of uneasiness.
I really believe that I subconsciously knew that something
was wrong. I had measured 12 weeks instead of 13 weeks
at my first hospital appointment. During the week before
the ultrasound I caught myself daydreaming that
I was on the phone to Clare and I was saying, "It's
happened to us, too!" I asked myself - why am I
thinking this? Then, the day before the ultrasound,
I had my monthly Midwives' Clinic visit and the midwife
let me listen to the baby's heartbeat! Oh, I was so
relieved!!! So, the next day - Valentine's Day,
it was with no fear, just pure excitement that we awaited
our first look at our baby.
The appointment didn't start
well. We had left home in a rush that morning and had
forgotten to bring in the appointment slip. The sonographer
was hesitant to do the scan without the official slip.
I felt so disappointed, I was looking forward to seeing
our baby! Eventually she agreed to perform the scan
on the condition that we would get the form and bring
it in immediately after the scan. I felt so excited
as I lay on the bed and she began to scan my belly.
After all, I knew my baby was alive. I'd heard the heartbeat
only yesterday, what could have happened since
As she began to scan she showed
us that the placenta was lying across the 'os' or opening
of the cervix - 'possible placenta previa'- meaning
that I might need a cesarean delivery. She explained
that this was not necessarily a problem; depending
on how the uterus stretched - the placenta may no longer
be covering the 'os' at term. Then she began to look
at the baby and she became very quiet. She halfheartedly
pointed out the feet, but she didn't really say
much at all. I thought this was odd because she had
been so chatty about the placenta. After a few minutes
she said that she was very sorry but Mark would have
to go home now and get the form. I thought - there has
got to be something seriously wrong, there is no other
reason why she would suddenly send Mark home in
the middle of the scan.
I sat in the waiting room and
waited for over half an hour while Mark made the trip
home and back. It was a very long half hour! The sonographer
kept coming in to see if he was back yet, she said something
like, "I just have to get someone else to
check my pictures, no need to panic you just yet..."
Which said PANIC to me (in big capital letters). The
screen was not really facing me properly, but I had
seen her going over and over the baby's face. 'What
is it?' I was thinking, 'Doesn't my baby have a nose
or something?' But deeper down my body seemed
to be chanting, "Anencephaly... anencephaly...
anencephaly..." over and over. I desperately wanted
Mark to get back, he seemed to take forever!
When Mark finally returned
we went back into the ultrasound room with the sonographer
and her superior. She showed him the placenta and he
repeated a similar explanation to the one she gave us.
He then took some of his own measurements. Eventually
he turned to us and said, "Now, there is a problem with
the ...fetus. We'll get someone down from Obstetrics
to explain it all to you, and perhaps it's best if you
save your questions until then." I know from his
pause that he would have said 'baby' if there had been
nothing wrong. I felt annoyed that my child was
not being given equal treatment, just because there
was something wrong. I wish I had just said, "Is
it anencephaly?", but instead I cried, and
let them lead us to the room where we were to wait.
The room where we had to wait
was very, very cold. I kept saying to Mark, "It
doesn't have to be fatal... It could be anything...
a heart problem, or kidneys, or lungs?" I
wish that they had told us straight away. We waited
there for over 45 minutes for someone to come and tell
us what was wrong!
During that horrible time of
waiting, I began to play a little fantasy over in my
mind... The Doctor would come in and say, "I'm
sorry, but your baby has Down's Syndrome" and I
would reply, "Oh, that's ok! I thought you were
going to say that our baby was going to DIE!" Then
I would pick up my bag and we would go off to our planned
Valentine's Day lunch!
When she finally came in, the
Doctor sat down and asked if we had been told what was
wrong. We said no, and she began to explain... "There
is a problem with the baby's skull..."
I gasped and buried my face
in my hands. So many images flashed though my mind -
Thomas Walter squeezing my finger as I held him...
his funeral... seeing his tiny coffin lowered into the
grave... hugging my sister... someone saying to me,
"If it had to happen to anyone, Clare's the one
who could handle it" (which stuck with me because
I thought it was such a bizarre thing to say!)
Mark said, "Do you mean
anencephaly?" She said yes, and then asked if we
knew about anencephaly. Mark explained about Thomas
Walter. She asked when he had been induced, then she
told us that there were two options. We could continue
on with the pregnancy, as Clare and Tom had, or we could
terminate. I said, "No, we wouldn't do that"
and from that moment on we never had any pressure put
on us at all. I am sure that our prior experience of
anencephaly protected us from the pressure and misinformation
that many parents faced during their pregnancies.
When we arrived home, Cecilia,
now 3 years old, asked if she could see the photo of
our baby. I said, "They didn't give me one today,
I'll have to get one next time I go to the doctor."
She said, "Are you a bit sad, Mama?"
And I replied, "Yes, our baby's a bit sick - it
has a sore head.", then she gave me a cuddle. I
wondered how we were going to explain to her that our
much looked forward to baby was going to die.
The next few weeks are a blur.
Both our families were very distressed for us. They
provided us with support, and helped us in many practical
ways, with cooking and baby-sitting for example, as
well as just being there for us. I read all the
personal stories I could find on the Internet of
people who carried to term their anencephalic babies.
I found these stories so sad, but also so very uplifting!
They portrayed how beautiful the lives of these babies
are - no matter how short. I read about all the wonderful
ways these families had made memories of their child's
brief life. Even though these stories made me cry, it
was such a good, healthy cry! I needed to cry - I'd
just been told that my baby would die!
We hadn't been told the sex
of our baby at that first ultrasound, so we arranged
to have another one done. We also had the second scan
video taped. We had searched our baby names books for
a name we liked which also had a nice meaning. When
the sonographer told us we were having a boy, I felt
so happy to know that I was carrying 'Benedict' (meaning
'blessed') 'Oliver' (meaning 'peace').
Immediately after diagnosis
I thought that the next four and a half months would
be an unbearably long time. How could I possibly live
through this whole experience? However, I was kept busy
with all the plans and arrangements we were making,
and looking back now it seems like no time at all. We
had monthly Midwives' Clinic visits to start with.
Our midwife, Maggie, was one
of the first blessings we encountered. Right from the
start she was willing to do whatever we felt would
help us in our preparation for Benedict's birth and death.
She offered to have us come in every week, just to hear
Benedict's heartbeat, if we wanted. She was so willing
to help in what ever way she could. She admitted that
she had never been in this position before and that
she wanted to take the lead from us. Apart from
the genuine care she offered us, she also acted as our
mediator, taking copies of our birth plan to all the
relevant sections of the hospital.
Over those first few weeks,
we gathered ideas from other parent's sites. I began
making lists of things I thought we should do to make
as many memories as possible. We made up a little 'Baby
Announcement' which said, "Mark and Teresa
Streckfuss have been blessed with a new baby boy, Benedict Oliver.
He is due on the 17th of July, 2001. A precious brother
for Cecilia and Sebastian. Please pray for us as he
has anencephaly and will not be with us long."
We sent this out to family and friends (and anyone we
could think of, really) in the month after diagnosis.
There were several purposes for this; the first was
to ask for prayers and to tell people about Benedict
having anencephaly, but it was also very important to
me that he was not forgotten ~ I didn't want people
to just pretend that I'd never been pregnant. I also
found an Internet support group 'Anencephaly Blessings
From Above' and I learned so much from these wonderful
people. There are over 100 members at time of writing, mostly
women (and a few men) who have lost a baby to anencephaly,
but also people like me who joined up while carrying.
I think this club was the most helpful thing for
me. It is so good to be able to get on the computer
every couple of days and 'talk' to people who have been
there before, exchanging ideas and getting answers to
It turned out that I did have
grade IV placenta previa. This caused several small
bleeds requiring short hospital stays of 2 to 4 nights
each for observation. I was in hospital seven
times between 28 and 36 weeks. This too proved to be
a blessing, because it meant that I had come into contact
with most of the Maternity staff before Benedict
was born. I was not a stranger to the hospital, and
the staff were not strangers to me. Mark took time off
work, and we were able to qualify for a government sickness
benefit so that he could look after the children. This
was especially good because it allowed him the time
to focus on Benedict too.
At the hospital, Benedict acquired
quite a reputation for hiding from the sonicaide. Every
time they would try to find his heartbeat there would be
a flurry of kicking and he would just disappear! It
often took them several minutes to track him down
again! Maggie used to joke that he was hiding in 'the
back room' - a kind of secret compartment! In some ways
I didn't mind being in hospital all those times, because
three times a day I would get to hear his heartbeat,
and feel all those beautiful kicks as he tried to hide!!!
Because of the placenta completely
covering the opening of the cervix, we had to have a
cesarean section at 37 weeks. This was another well disguised
blessing, I wanted a cesarean anyway. I had read statistics
stating that babies with anencephaly born vaginally
have a 50% chance of being stillborn. I couldn't imagine
facing labour with the thought that Benedict could be
born still. I wanted to say "Hello" before
"Good bye" and to me the only way of ensuring
that was to have a cesarean. However, I don't know if
they would have let me have one without the placenta
previa. It was VERY important to us that Benedict would
be born alive!!!
So on Monday the 25th of June,
at 1:52pm, Benedict Oliver was born. He lived for 24
hours and 13 minutes, dying at 2:05pm on Tuesday. I
don't think I can possibly tell you how beautiful
he was, or how sweet he smelled, or how much I wish
those hours were frozen in time. He wore the tiny little
premie hat the hospital gave us. I had thought it would
be way too small, but it fitted perfectly! His face
was so sweet, he looked just like our other children
had at birth. He was just perfect! He weighed only 5lb
9oz (2600grams) but he was very chubby and measured
46cm long. He cried out at birth and several other times during
his life - not a loud healthy baby scream, but a cry
none the less.
He cooed, and made a soft little pah-pah
noise when he breathed. He had light brown hair, ticklish
feet, and once he sucked his thumb for about 15 minutes!!!
We took so many photos, about 13 rolls while he was
alive. We took both colour and black and white shots and
I am very glad we have both. The time we had with him
was so precious.
We had arranged for a priest
friend of ours be present at Benedict's birth.
So, as soon as he was born, Fr. Colin was there to baptize
and confirm him. Fr. Colin gave us great support. He
met with us while I was pregnant and gave me a
special blessing and went through all the arrangements
with us, etc. Then after Benedict was actually born
and he was finished his 'priestly duties', he
grabbed the camera and started acting as 'photographer'!!!
The staff were AMAZING. The
theatre staff were wonderful - some of them cried,
some of them prayed, many of them patted my head or
my hands while he was being born. I was so happy to
finally see him. I remember the anesthetic nurse saying,
"He's a little saint already now, isn't he? He's
been baptized and confirmed - he's perfect!" I
thought that was so sweet of him! Then, when we were
back on the ward, the midwives were just so beautiful. They
left us as much as they could, popping in to do our
jobs occasionally. They were so caring. Benedict
wasn't able to breast feed, and they helped me express
collostrum which we fed to him on a spoon. He had three
feeds in his life this way. I don't think he ever got
hungry, but I was glad I was able to nourish him like
this. A few days after he had died, when my milk came
in, I wished he had lived long enough to have some proper
milk, but this made me feel all the more how glad I
was that he had at least had some collostrum.
I have nothing but praise for
the midwives and nurses who looked after us during
Benedict's life before and after birth. They looked
after Benedict with such love, and with the respect
he deserved. Maggie, the midwife we saw for our
ante-natal visits, was particularly wonderful. She was
with us at the cesarean, but she was not on duty
~ she was just there as a support person! She
also came to Benedict's funeral, and one of the other
midwives was there too.
A professional photographer
came in and took photos of Benedict on Monday afternoon.
This was not something we arranged. Anytime the hospital
has a baby stillborn, or who is going to die like Benedict,
this photographer comes when they call him - anytime,
day or night - and takes photos for free. We are so
grateful to him for this service. He took some beautiful
shots of Benedict's hands and feet, and some of Mark
and I holding him (which is really good because Mark
took most of the other photos so there's not a
lot with both Mark and I in the shot). This photographer
also does the healthy babies' photos, and because he
was coming in the next morning, he got our photos ready
and brought them in to us the next day! It was so good
to have these beautiful photos to look at that afternoon after
Benedict had died. We also had a lady come and take
molds of Benedict's hands and feet. She did a
beautiful job, the molds are so clear you can see his
little fingernails, wrinkles and creases.
Benedict had lots of visitors.
He met Cecilia and Sebastian, both sets of grandparents,
all 14 aunties and uncles, 21 of 24 cousins, his godmother,
and another priest friend of ours. One of his cousins
even brought his bubble mixture to the hospital and
blew bubbles for him! After about 10pm we had him to
ourselves. It was so nice to have all that time with
just the three of us! We were so very, very tired but
we didn't want to sleep, we didn't want to miss what
time we had left with him. I kept making little goals
for him, please make it to 12 am, please make it to
17 1⁄2 hours (which was how long Thomas Walter
lived for), please make it to morning... I was so proud
of him living for as long as he did, I wanted
to be able to say that he lived for a day. Eventually
we were so exhausted that we took turns dozing, although
I slept so lightly that I woke every time he moved,
I think! We both sang to him and Mark read to him, but
mainly we just held him and loved him.
The nurses told us that his
colour would change as he became weaker. They
kept telling us how good his colour still was. He started
to have seizures on Tuesday morning, but his colour
would always return afterwards. Then, after he died
(without his colour changing significantly) I think
one of the nurses felt bad, she came in and said
something about him going quicker than she expected,
but straight away I said that we had over 24 hours,
which was far more than we had ever hoped for! We really
were so grateful for the time we were granted with him.
After he died we bathed him and dressed him. We took
lots more photos, and we video taped the bath so that
we would be able to see all of him. We kept his body
with us over night, and until the funeral director came
to get him on Wednesday afternoon. Mark was able to
stay with me in hospital the whole time. It was great
that we could be grieving in there together.
We came home on Thursday morning,
and on Thursday night we spent hours getting the cover
of his funeral booklet done. It took a bit of fiddling
around, but I was VERY happy with the final result.
It had a photo of Benedict's face on the front, a photo
of his feet on the inside back cover, and a poem on
the back. I had typed up the booklet before he was born,
so all I needed to do was add his dates and do the cover.
I was very glad that I had everything prepared beforehand.
It meant that when he was born, we could just think
of HIM, we had nothing else to worry about.
On Friday night we had his body
at home and our families came over for a short time
to say good bye. I was worried how this would effect
Cecilia and Sebastian, but it was really great for them.
The times they saw him in the hospital were too short,
and with too many distractions. We have some beautiful
video footage of Sebbie vigorously rocking Benedict
in the cradle saying, "Baby, baby, baby!"
(Bay-beee, bay-beee, bay-beee). Cecilia sang to
him in the morning, and made sure he had his teddies
with him. She looks after his teddies now.
He spent the night in the cradle
by our bed, and in the morning I dressed him in the
outfit I'd bought to bury him in. It was very hard to
wrap him up for the last time and put him in the coffin.
It was even harder to close the lid and know that
I would never see his sweet face again. I am so glad
I have so many photos, I look at them all the time.
We put lots of things in the coffin with him: a rabbit
toy, 1⁄2 of a Mizpah coin (I wear the other 1⁄2
), rosary beads, a miraculous medal (which had been
pinned on his blanket at baptism), a guardian
angel pin and letter from his Godmother, a drawing from
Cecilia, a lock of hair from Cecilia, Sebastian,
Mark and I, and he was snuggled up in a cozy red polar
fleece blanket I made for him. We drove him to the church
in our car, and it was very sad to think that was the
only time all five of us would be in the car together.
The funeral was not as hard
to deal with as I expected. Generally I get VERY upset
at funerals and that is, of course, what I was expecting
at my own baby's funeral. I think that normally the
funeral is the one 'grief point' with other deaths,
but we had been grieving over Benedict for four months
already - so the funeral was not as intense as we anticipated.
Naturally I was sad, but not hysterical like I thought
I would be. Benedict is now buried beside Thomas Walter
at the small cemetery where we live. It is very sad
to go to the cemetery and see his tiny little grave,
but I am glad he is right next to his cousin. It is
a comfort to have them side by side, especially when
the same defect caused their deaths. Benedict and Thomas
Walter have another baby cousin, Peter Francis, buried
nearby and it is nice to have the three of them together.
You maybe wondering at me referring
to my son as 'beautiful' and 'perfect' when he had anencephaly,
which is an obvious physical defect, but he was beautiful
and perfect and every other cute baby description you
could think of ~ he was my son!!!
I don't love Cecilia and Sebastian
because they're healthy, I love them because they are
my children! I miss him so much, but I wouldn't trade
his life for anything. And while this has been the most
painful experience I've ever had to endure, it's probably
been the most beautiful as well. Benedict spent
his whole life in the arms of people who loved him
~ who could ask for a better life?
To Charlotte's Story (Benedict's Sister)...
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.