My husband, John Mark, and I
found out we were expecting our second child in February
2007. Our son, Jack, was 8 months old, and we
were so thrilled that he would have a sibling to grow
up with. My pregnancy with him went so smoothly,
that the news we heard at our 20 week ultrasound was
a tremendous blow. Our baby had an omphalocele,
which meant that early in development her abdominal
wall didn't fuse completely, and part of her gastrointestinal
tract protruded outside of her belly. She also
was found to have bilateral club feet and a malformed
sacrum (lower spine). It was difficult to hear,
but at the same time, her heart and brain looked healthy,
so we had no reason to believe that she wouldn't make
it through this. During the following few months,
we discovered that her condition was more complicated
than we initially thought. They could never locate
a bladder, which led the perinatologists to believe
that she had a condition called cloacal exstrophy.
This is when the organs in the omphalocele prohibit
the bladder and genitals to fuse together during development.
Thus, her bladder and uterus were split into two and
were also located outside the abdomen. Cloacal
exstrophy is a rare disease that is incredibly complicated,
but with proper care, the children can grow up to live
relatively normal lives. Many children have permanent
stomas and catheters. Some cannot walk.
But I have talked to several mothers with exstrophy
children, and these kids have been nothing but blessings
for their families.
Cloacal exstrophy often affects
lower extremity and spinal development. The numerous
ultrasounds indicated that our daughter had a very small
right leg, bilateral club feet as mentioned before,
and severe scoliosis of the lower spine. Her pelvic
bones were spread apart, which is very common in CE
(this is usually corrected within the first few years
of life by realigning the pelvic bones and placing the
child in traction to allow them the bones to properly
fuse and heal).
Most babies with cloacal exstrophy
are unfortunately aborted, and many pediatric urologists
have never performed (or have rarely performed) the
complicated surgeries required for the reconstruction
of the child's urinary tract and genitals. We
researched online, interviewed surgeons, and prayed
fervently about where God was calling us to seek treatment.
We decided to move to Baltimore, Maryland to deliver
Bernadette and have her treated at Johns Hopkins Hospital
We met with the top urologist for this condition, Dr.
John Gearhart. We spoke with a pediatric orthopedic
who would work on her legs, feet, and pelvis.
We also spoke to the perinatologist, neonatologist,
and pediatric neurosurgeon. It was incredibly
difficult to say goodbye to our home with the expectation
of not returning for several months. And we knew
that we would spend many more weeks in Baltimore during
future trips for subsequent surgeries. But as
parents, we never thought twice about what we were doing.
God opened up many doors for us, our friends and family
supported us, and we just went with it. We were
scared out of our minds, but it just simply came down
to wanting what was best for our daughter.
We packed our bags on October
5, 2007 and drove the 13 hours to Baltimore. We
stayed with friends (we planned on moving into the Ronald
McDonald House once she was born), and I continued to
get ultrasounds done to check on our little girl's progress.
John Mark flew back home to work another week until
it got too difficult for me to take care of our 16 month
old son alone. On October 17, at 37 weeks, I went
in for a fetal echo to check on the baby's heart.
I had had several non-stress tests since arriving in
Baltimore, and her heart rate and movement were right
on target. So, when they started the ultrasound
- a procedure I had gotten quite used to - I witnessed
the completely unexpected. Her heart wasn't beating.
No matter how hard I tried, I just couldn't see her
heart beating inside her tiny rib cage. That was
the darkest moment of my life, and I still shake when
I think about it. John Mark was 40 minutes from
the hospital and had Jack with him (and I had the car
seat), so I frantically called the few people I knew
in the town to come get my son so that my husband could
be with me. Finally, over an hour later, he was
able to be with me in Labor and Delivery. Bernadette
was breech, but since she was dead, there was no reason
to deliver her via C-section. They induced me,
and I delivered her the following day. Labor was
a bit surreal. There simply is no way to describe
what it's like to be pregnant but to know that your
baby is lifeless within your womb. The hours were
long, and I was more scared than I ever thought possible.
The epidural didn't work properly, so the pushing was
incredibly painful. I remember repeating "I
can't do this, oh God please, I can't do this."
I remember praying to Mary, yet at the same time, I
felt incredibly alone, abandoned, and terrified
How could a loving God allow this to happen? Why
wasn't it enough forHim that she was sick and that she
would have had much pain in her life? Why wasn't
it enough for Him that we had packed up our lives and
moved to get her the best help possible? Couldn't
He see that she was wanted? None of this made
sense! But He was with us all along. When
I felt abandoned by Him, he was as close to my heart
as He ever has been before.
When Bernadette was finally
delivered, I only remember the silence. I kept
shaking my head, not believing what was happening.
Not wanting to see her because I didn't want to believe
that she was really gone. Since her anomalies
were pretty drastic, I asked for them to wrap her up
before handing her to me. John Mark was able to
see her, but my completely shattered heart simply couldn't
handle it. When they carried her to me, that is
when I broke down the most. Why was she taken
away from me? Couldn't God see that there was
no safer place for her than in her mother's arms?
For 2 weeks, I wasn't
able to utter a prayer to God. Going to church
felt hollow, and I felt guilty for receiving Communion
when I wasn't even sure that He existed. It took
time, but when I learned to accept this unbearably heavy
cross, it was like a floodgate of grace that overflowed
in my life. In the weeks following her death,
some people questioned how I could possibly get up in
the morning and go about my day. Many friends
praised my strength. But I wasn't strong!
I was an absolute wreck! It was so obviously God's
grace that kept me standing.
Because we were so far from
home, we chose to have Bernadette cremated so that we
could take her back home with us. It wasn't something
I wanted to do, but we didn't have much of a choice.
It took a week to have the autopsy done, and well, to
put it simply, that week was the longest of my life.
I spent much of the time curled up in bed, and the rest
of the time was spent packing our bags. No words
can express the feeling of defeat I experienced while
packing up for our trip home. Every piece of clothing,
every folder of medical records, every toy to keep Jack
entertained, every single thing that was with us was
for Bernadette. Every move we had made in the
past 6 months was for her, and now we were packing it
all up for nothing. Driving home with her ashes
in my lap brought on so many emotions - relief that
we were leaving the bad memories behind, yet a very
strong yearning to stay, to be in that place where I
had felt her last movements. That place symbolized
hope for us, and driving away from it was as if we were
We buried our daughter a week
after we arrived home The funeral was very healing
for me, because it reminded me of what life was all
about. It's about serving God on earth, so that
we are able to share life with Him in eternity.
Bernadette served God in so many ways while she was
here...she has touched so many lives and has made John
Mark and I better parents to our son. And now
she is with God forever. She is with our mother,
Mary, and all the Saints. And although I was never
able to look into her eyes and tell her how much I loved
her, she knows. She knows how much I love and
miss her. She knows my sorrow, yet she knows how
much deeper my faith is because of her. She knows
that we wanted her in our lives so much, but that we
are learning to accept that God has a greater plan for
her and our family. I often get very sad to think
that our son will never get to know his little sister.
But then I realize that he will. We will share
her story with him, we will teach him to pray to her
and to ask for her protection over our family.
I am convinced that she is the reason he has blossomed
into the wonderful 2 year old boy that he is.
She really is our patron saint in heaven!
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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.