Little Joshua held by his mother

Our story began with trying to decide if our family was complete. My husband and I agreed back when
we were dating that three children seemed like a good number. So after our 3rd daughter was born, we
figured our family was complete and my husband went to the doctor for a vasectomy consult. Quite
truthfully, he was about ready to be done with one when our 1st pregnancy ended with us having to be
induced at 38 weeks because of pre-eclampsia. My daughter and I were fine, but the potential of
problems and the unknown were always very stressful for him during each pregnancy. When he got
home, I asked him when his appointment was and he said he hadn’t made one, that he felt he needed to
pray about it (I was all for this because I didn’t feel like I was “done” having babies). After many months
and much prayer, Brandon finally got an answer which started with ‘”Go head” then came the part that I
preferred to ignore “ I don’t promise everything will be okay, but I will take care of it”.

In the past, it had not taken long for us to get pregnant, so after a few months went by I began
to wonder if God’s answer was ultimately going to be “you’re done”. Just as we were starting to set
deadlines (if it doesn’t happen by…. we’ll be done), we found out we were pregnant. We started out
with a few unusual symptoms but nothing we hadn’t had before, and pretty soon things were going
smoothly (aside from the nausea and fatigue). We were very excited when we were able to hear the
heartbeat with the Doppler at our first prenatal appointment. Out doctor was amazed because we were
only 9 weeks along. I couldn’t wait for our next appointment so we could check off the three month
mark and with it the risk of 1st trimester miscarriage. The doctor’s comment at that appointment was
“everything looks great”! Our next appointment was uneventful as well aside from the fact that I was
measuring a little big. The doctor ordered an ultrasound just to check and make sure that our dates
were correct and to rule out twins (they run in my family).

The ultrasound was scheduled for Friday, December 15 (approximately 19 weeks along). Since
we anticipated this would be our last ultrasound, we invited our moms to come along so they could see
the baby and help watch our girls (my mom had never seen one). We were fortunate to get “the big
room” and have everyone there to see at the same time (as long as they kept quiet) however, we were
told I hadn’t had enough water and should go back to the waiting room, drink some more and wait a
little bit and then they would try again. When we went in the second time we did not have a big room
so everyone had to take turns coming in. The technician said she was having a hard time getting all of
the views she wanted because the baby was hiding behind the placenta, so she got what she could and
said for us to go back to the waiting room so she could show the radiologist and then they would hive us
the results (we had never had this before but assumed it was because we wanted to find out if it was a
boy or a girl). When she came out she just asked when our next appointment was and said to go ahead
and keep that appointment and our doctor would give us the results then. We felt a little troubled all
weekend because of her strange demeanor so we decided to call our family doctor on Monday.

As it turned out, we ended up scheduling an appointment for our youngest daughter that day
because she had a sinus infection. While I was getting ready for her appointment, the hospital called to
see if we could come in to try to get some better views of the baby, so we set it up for just before
Lauren’s appointment (our Dr. is in the same building). When we got there the technician brought us to the room and went to get the radiologist because he wanted to do the procedure himself. While she
was gone we snuck a peak at the sticky note on the file, it said “possible anomalies”. After getting a few
views, the radiologist stopped and told us that the reason they were having trouble getting the pictures
was that the amniotic fluid was low. He also said our baby had two significant abnormalities and they
were probably chromosomal, one of which was a hydrocephalus. He said we should have a specialized
ultra-sound and possibly an amniocentesis and that he would call our doctor to have him explain
further. The technician finished up the rest of the ultrasound and then we went upstairs to talk to Dr.
Mohr.

After he took care of Lauren, Dr. Mohr explained what they had found. He said the baby had a
hydrocephalus with possible cystic hygroma and a ventral-abdominal wall defect linked with
omphalocele and explained what each of them is. He also explained that each is life threatening, and
together are nearly always fatal. We spent some time asking questions and he set us up with a referral
to a perinatologist (aka Maternal-Fetal Medicine Specialist) to do a more detailed ultrasound that would
help to define the anatomy and from there we would monitor things over time. Knowing us as he does
and being a Christian himself, he never even mentioned ending our pregnancy. Before we left, he
warned us that we might not want to look for information on the internet because what we found
would probably be disconcerting.

Needless to say I cried pretty much the whole way home. When we got home we sat down with
our girls to explain that mommy was crying because the doctors had found out that our baby was very
sick and didn’t know if it would be able to come home to live with us when it was born. We sent out an
e-mail to our family and friends after the first set of ultrasounds explaining what the doctor had said and
that humanly speaking our baby did not have much hope of survival past birth. We were sad but in the
midst of the grief and pain of hearing the difficult news, we also had a great peace. We also shared a
scripture verse that had come to my husband from John 16:33 where Jesus said “I have told you these
things, so that in me you may have peace. In this world you will have trouble. But take heart! I have
overcome the world”. We took great comfort knowing that God would take care of our baby when we
could not. At this point we did not know if His “taking care of it” would mean that he would
miraculously heal Joshua or that he would take care of him in heaven. Obviously we hoped for the
healing but we felt a great peace when we prayed “Thy will be done” and knew that God would help us
accept the answer.

Our next ultrasound was about two weeks later with Dr. Balaskas (the MFM specialist). It was
great because he showed us everything he saw as we went along, however… there were lots of things to
show us (including that he was pretty sure “it” was a boy). Here’s where things started getting a little
technical. Our baby had a unilateral left hydrocephalus (AKA water on the brain), a large septated cystic
hygroma (fluid filled sack on the back of the neck), two clubfeet, two clenched hands, an atrioventricular
canal defect, the majority of the abdominal wall was not there and his liver, bowel and possible kidneys
were outside of his abdomen. He also had an open neural tube defect, scoliosis, a horseshoe kidney,
and a short, 2 vessel umbilical cord. After the ultrasound, we went to a small conference room so that
he could explain what all that meant and get our family histories etc. He said that given the
combination of abnormalities there was a 60-80% chance it was caused by a chromosomal abnormality, most likely trisomy 13 or 18 or triploidy and what each of them were. Some other possibilities were
limb-body wall complex, pentalogy of Cantrell, and amniotic band syndrome. He explained that with the
ventral wall defect and the multiple organ system anomalies the prognosis was “uniformly fatal” and
that the risk for stillbirth was greatly increased. Dr. B offered to show us pictures form medical books if
we wanted (we declined). At that point he told us that in light of the prognosis some people choose to
have an early induction or that we could opt for “non-aggressive pregnancy management” (basically we
could continue as long as possible provided my health was not in jeopardy but if I want into labor, they
would not try to stop it). We said we definitely wanted to continue as long as possible. He told us that
was a very valid option and, when we asked, assured us that the baby would not be in any pain as long
as he was inside of me. We could continue to see our regular doctor and come back in about a month
for a repeat evaluation. After explaining the risks, he asked if we wanted to do an amniocentesis and we
decided we did (it wasn’t as scary or painful as I thought it would be). They would run two tests, a rapid
“fish” test would give us the initial results in about 48 hours and the full test would be done in about 10
days. When we got home I checked my pregnancy books to find out more information … I found a few
short paragraphs on some of the items. Between the three books I had, I found that the chances of
hydrocephalus are approximately 1 in 1000, the chances of omphalocele are 1 in 5000 and that most
babies with trisomy 13 or 18 live less than two years.

The results of the amnio came back quickly (just seven days for the full test) and revealed that
all the chromosomes were normal and that we were definitely having a boy! So we could rule out the
trisomies and it was probably limb-body wall complex (LBWC). The new diagnosis did not affect the
prognosis but Dr. B explained to us that with LBWC, something happens somewhere between five and
eight weeks of development, to cause the abnormalities, there was nothing we did to cause it nor could
we have prevented it, he also said it is very rare in part because most babies with this condition miscarry
in the first trimester, and that the chance of recurrence is no greater than that of the regular population.
He said I should be able to have a normal vaginal delivery but that usually they do not use the fetal
monitor so we would not have to watch if his heart rate started to drop since there was not anything
they could do that would improve his condition long term.

I had started looking for names when the doctor thought he saw “boy parts” during the
ultrasound and we finally decided on Joshua Geoffrey Sloterbeek. Joshua meaning “Jehovah is my
salvation” and Geoffrey meaning “God’s peace”. Through all of the uncertainty during the two weeks
we had to wait for the ultrasound with the specialist God blessed us with unimaginable peace (I call it
crazy peace). Later that night we sat down with our girls and told them that Joshua was not just sick but
that part of his body was broken and unless God did a miracle, he would go to heaven instead of coming
home. Erica (our 2nd) was very upset because she had been looking forward to rubbing on his soft little
head. When we told her she still could, she felt much better.

While we hoped for the best, we prepared for the worst and found that having time to prepare
was a blessing. It was hard at times to try to go about life as usual knowing that Joshua would not be
coming home with us after he was born. While we waited, we began to prepare for his arrival and
departure. Brandon called around to funeral homes to find out how that all worked because we had
never been involved in planning one before, and I packed our bags for the hospital with things that hopefully would be small enough if he came a little early (they weren’t). We kept family and friends updated with e-mails and phone calls and were blessed by people praying from Germany to California
and Florida to Canada. I also put together some information about the girl’s regular routines and Erica’s
medication schedule (she was diagnosed with asthma the day before the 1st ultrasound with our
specialist).

At our next regular appointment (January) we talked with Dr. Mohr about what to expect during
labor and delivery including what a preemie might look like and all the things we had discussed with Dr.
B. In February we had a follow up ultrasound, I was secretly hoping the Dr. would say “would you look
at that , It’s all normal” but it showed all of the same problems though, the hygroma was a little smaller
and they weren’t sure but there might be amniotic bands which again would not change the prognosis
but would provide a different explanation. We continued seeing our family doctor for regular OB visits
and were able to enjoy hearing his strong little heartbeat both at our appointments and at home with a
stethoscope. Joshua enjoyed giving me little kicks and punches and every once in a while a breathtaking
belt just to remind me he was there. The girls enjoyed “zerberting” my belly and thought it was fun
when he would get the hiccups (he had them quite regularly). Somewhere around 28 weeks I started
having occasional Brackston Hicks contractions, which turned out to be good because it started to
prepare me for the idea that he might come early.

On Tuesday, March 6 at about 9:30 in the morning my water broke. We called the doctor’s
office and they told us to go up to Labor and Delivery at the Hospital. My husband asked if I wanted him
to notify our church prayer e-mail coordinator. I told him not until we knew for sure that my water had
broken. The last thing I wanted was for the whole congregation to know if I had just wet my pants.
When we got here they hooked us up to the monitors to check if I was having contractions while they
went to call our doctor. I wasn’t contracting but we were able to see that Joshua’s heart was still going
strong. After confirming that my water had broken and talking to the doctor, they transferred us to a
labor room. The plan was to wait 24 hours to see if labor would begin on its’ own, it didn’t. We spent
most of the day Wednesday on Pitocin having contractions that got us nowhere. In the early hours of
the morning Thursday, they took me off that so the contractions would stop (to say I was a little bit testy
at that point would be putting it mildly) and we switched to Cytotech. When that finally started things
in motion, they started the Pitocin back up close to midnight. At about 10:15 that night Joshua had
given me a good kick which was nice because I had just started to notice I hadn’t heard from him in a
while (we didn’t have the monitors on anymore). Finally on Friday morning at 9:30 AM Joshua was
stillborn in perfect peace. He weighed 3lbs. 8oz. (being just over 31 weeks, the doctors had guessed he
would be 2-2.5 lbs). Our regular family doctor delivered him which was a blessing. It was a wonderful
blessing that when the doctor laid him on my belly, I couldn’t tell at first if he was breathing (I had been
unsure if I could bring myself to hold him if he was stillborn) so I just started to wipe him off like I did
with his sisters. By the time I realized that he was not going to take a breath, I was already holding and
touching him and couldn’t resist kissing him, he was so soft and warm and beautiful.

While they were getting me cleaned up, Brandon went out to tell the girls (and our parents) that
Joshua had gone to heaven but that his body was still here and we would get to hold him and love on
him for a little while. The doctors had told us we could keep him with us as long as we wanted so we kept him until about 6 pm Saturday. During that time both of our families came up to spend time with
us holding him and loving him (my sister even made it up from Colorado). My mom said later that she
was surprised we had let everyone hold him, I guess I never thought of not letting them ( I just wasn’t
sure if they would want to). We took lots of pictures and some video and the nurses made a plaster cast
of his hands (his feet wouldn’t work), as well as an ink print of his hands for me to put in my scrapbook.
Our nurse Lisa was especially wonderful in the tender care she took while bathing and caring for Joshua.
Saturday when we were ready to go home, we walked down to the morgue with the nurses so
we could be with him as long as possible (Brandon carried him). I had prayed that God would help me
remember that this was his earthly body and that he wasn’t here anymore and he granted me an extra
measure of peace yet again. We said our goodbyes and went back to our room to get our things and go
home.

His memorial service was on Tuesday March 12. The service was beautiful. Brandon and I each
held him one last time before the service began and together we closed his casket. Brandon made a
video/slide presentation to show and we played music from the CD Precious Memories by Alan Jackson
which had and continues to bring me comfort. We weren’t sure if we would be able to have the
graveside service the same day because of our “lovely” Michigan March weather but over the weekend
it started to warm up and we were at the graveside in short sleeves (it was 70 degrees) with snow on
the ground. What an answer to prayer! After Brandon placed Joshua’s “box”(casket) in “his spot” (the
grave), the girls placed flowers they had picked out with their daddy the day before (this was Sam’s idea,
they had done that at chuck-the classroom hamster’s “funeral” last year). We also had a “funeral party”
(luncheon).

I so treasure the experience of giving birth to my son. We have had amazing peace since the
beginning that God would take care of us and Joshua, just as he had promised. We were blessed that
Joshua’s head and arms were so perfectly formed ( the nurses said often that is not the case) as you can
see Joshua was beautiful which was a specific answer to prayer. It has been difficult to not be able to
find out more but I try to remind myself that it does not matter how this happened or why because I
know without a doubt that God picked us for Joshua and Joshua for us. He brought us Joshua for a time
to love and care for and I would be glad to do it all over again. I still get sad at times because I miss my
son but I know that God didn’t choose for us to suffer, he chose that we would enjoy the privilege of
knowing this very special little boy. Through it all God took care of all the details, there were so many
things that were perfect in the way that they occurred. Things that made me so sad to think about were
taken care of. For example, I was sad that my sister might not be there, she made it. I was concerned
about my grandparents down in Florida being all alone when they heard the news, My Aunt and Uncle
were there on vacation. Because we were able to look into funeral arrangements before Joshua was
born, we were able to fully enjoy the short time we had with him. I didn’t know if I would be able to
hand him over to the nurses when the time came to leave, we were able to bring him down to the
morgue ourselves (with the nurses of course –one of them was my cousin who was covering extra shifts
that week). God took care of all my worries both known and unknown. Through this experience I was
reminded that God knows me. He knows that I like to plan for things. He knew I needed time to
prepare (he allowed me 12 weeks) and time to adjust (3 days) to the idea that that Joshua was coming early. He knew it would be too hard for me to watch my son suffer, so he was born in perfect peace. He
knew that I was afraid to hold Joshua if he was stillborn, so He made it happen in such a way that I was
holding him before I knew…and I wouldn’t trade holding him for the world. A verse that has become
significant for me is Psalm 139:13-16, it says: For You created my inmost being; You knit me together in
my mother’s womb. I praise you because I am fearfully and wonderfully made; Your works are
wonderful, I know that full well. My frame was not hidden from you when I was made in the secret
place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the
days ordained for me were written in Your book before one of them came to be. God knows me and He
knows my Joshua. Through all these things God has blessed me, cared for me and has begun to heal my
broken heart. It is not that I do not grieve for my son, I still miss him, but I am able to have joy that I
was/am his mother. Many people have said what a testimony we have been but it is not us that they
are seeing, it is the work of God in our lives.

There are many things that I found to be unique and/or difficult about having a stillborn child.
To start with, it didn’t really seem appropriate to do a birth announcement and yet I wanted the world
to know that my son was here and he was beautiful and we were both glad and proud he was part of
our family. So I took great care in writing his obituary (birth announcements are free but you have to
pay for an obituary –seems backward to me). I had started to write it before he was born but could
never get it quite right until the night we came home from the hospital. I think it’s probably because I
thought I would be so sad and instead I was so proud and happy to have my special boy. I found that
planning a funeral is a little like planning a wedding only with a much shorter time frame. One of the
hardest things for me is that, when they find our your child was stillborn, most people don’t ask to see
pictures. I’m still a proud parent so I carry a picture in my wallet just in case. It took me a little while to
realize it is possible to be sad and have joy at the same time.

When I was a little girl, there was a song my mom taught us called I’m Something Special. One
of the verses says …When Jesus sent you to us, we loved you from the start. You were just a bit of
sunshine from heaven to our hearts. Not just another baby, for since the world began, there’s been
something very special for you in his plan. That’s why he made you special, you’re the only one of your
kind. God gave you a body and a bright healthy mind. He had a special purpose that he wanted you to
find, so he made you something special, you’re the only one of your kind… There will never be another
Joshua, he was a special blessing.

When Dr B. had examined Joshua at the hospital he said it was definitely Limb-body wall complex. Since
his birth we have ventured to look at more of the information online (Brandon had checked some out
before so I wouldn’t have to look at it) and our doctor was right, many of the images would have been
difficult to look at before having met my precious son. The following is some of what we have learned.
As far as commonality goes, the numbers I have found are from some articles is 2001, they are .7/10,000
births and 2.5/100,000 births (no wonder I had a hard time finding info.). The “textbook” definition goes
something like this: Limb-body wall complex (LBWC) is a rare fetal polymalformation of uncertain
etiology, but has been regarded as sporadic in nature with a low recurrence risk. It is uniformly fatal (most babies miscarry in the first trimester, the rest are stillborn or die shortly after birth). LBWC is
diagnosed based on the presence of at least two of the three following characteristics:

1) Exencephaly/encephalocele (skull fails to form /brain is located outside of the skull) and facial
clefts
2) Body-wall disruption i.e. thoraco and/or abdominoschisis (hole in the chest or abdominal
wall), or diaphragmic hernia (a hole in the diaphragm that allows the stomach etc. to put
pressure on the heart and lungs)
3) Limb defects i.e. club foot, etc.

A definite association with internal anomalies (horseshoe kidney, abnormal genitalia etc) and severe
kyphoscoliosis (a type of curvature of the spine) makes a more distinct concept of the pathogenesis
reasonable.

There are three theories as to what causes it but currently none of them has been proven. It is
sometimes referred to as body stalk anomaly.

Thank you for letting me share about my precious son.

Joshua’s mama,

Dawn Sloterbeek

P.S. If you would like to contact me my e-mail address is bdsloterbeek1@allcom.net please use the
subject line Joshua’s story. To see our memorial video and more pictures, please visit my blog at
www.momslikeme.wordpress.com

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-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.