Leah’s Website http://leahgracejarmer.blogspot.com/
In July 2008 we found out we
were expecting our second child. On November 12, 2008,
at my routine 20-week ultrasound, we learned that our
baby girl had several complications. The ultrasound
revealed Leah had a cleft lip, closely set eyes, and
a very rare but severe brain malformation called Holoprosencephaly
(HPE). My doctor also suspected Leah had Trisomy 13.
He said, regardless of the exact medical condition,
her brain most likely did not form properly enough to
allow survival. It was unlikely I would carry Leah to
term. If we made it to term, she most likely wouldn’t
survive birth. And even if she survived birth, she would
only live minutes, hours or days. We were completely
heartbroken and overcome with grief that our unborn
baby girl was very sick, and may not reach our arms
alive. We loved her so deeply, and at that moment begun
surrendering our plans for Leah to the Lord. We realized
it was His plans alone that would come to pass in her
We declined amniocentesis, because
having a more accurate medical diagnosis didn’t
change the severity of Leah’s condition. The doctors
predicted her life would be short, and we didn’t
dare risk making it any shorter through the potential
risks of the test. Our doctor advised us that the main
reason most parents choose Amniocentesis is to decide
if they will continue with their pregnancy. This decision
had already been made in our hearts years ago, as we
believe that each precious life begins at conception
as God forms each child within his mother’s womb.
Terminating my pregnancy and thus ending Leah’s
life prematurely, by our own hands, was unthinkable!
We believed Leah was a gift to our family and that our
sovereign God would write her story, beginning to end.
We fully understood and grasped the reality that without
God’s healing, Leah would die. But for God’s
glory, first, she was going to live!
On March 19, 2009, we went
straight from our 38-week appointment over to the hospital
for emergency induction. I was induced because Leah’s
amniotic fluid levels were becoming dangerously low.
In addition, my blood pressure was getting too high.
During the several hours of labor, we held our breath
as we watched Leah’s heart rate drop with each
major contraction. Our deepest hearts desire was to
meet Leah alive. We were even prepared to have an emergency
C-section, should my doctor think that would allow her
to survive birth. After learning about how well my first
delivery had gone, he was cautiously optimistic that
Leah’s could be a vaginal delivery as well. We
had focused much prayer on Leah’s upcoming delivery,
as we knew the shorter and easier the delivery, the
better chance Leah could survive birth. Once it was
time to push, her head was already crowning. Within
seven minutes, and two pushes, Leah was born crying!
Leah Grace Jarmer was born
on March 20, 2009 at 2:57pm. She weighed 5 lbs. 11 oz.
and was 18 _ inches long. She had blue eyes and strawberry
blond hair, just like her Mommy. She was born crying
and breathing on her own – answers to two of our
most fervent prayers. Her first APGAR score was 8, and
she was already doing so much better than we were told
to expect. She spent the first 30 minutes of her life
being closely monitored by a NICU team in our birth
room. My first thought when I finally got to hold her
was that she was so beautiful! Within her first hour
of life, we invited all of our immediate family into
our room to meet Leah, as she remained cradled in my
arms. Her breathing rate and oxygen levels were starting
to drop, so they wisked her off to the NICU. My husband
Luke never left her side. It was several hours before
I could go and join them, although it felt like an eternity.
As I waited, I felt the deepest sense of thankfulness
for all that I had already gotten. I’d gotten
to hold her, kiss her and tell her I loved her. She
had overcome such immense odds to simply reach my arms
alive. I felt like if this was all I was meant to have
with her, I would choose to accept that. But at the
same time, my heart hoped and yearned for so much more!
Upon birth, the Neonatologist
informed us he was quite certain that Leah's body did
not look like a typical baby with a chromosomal disorder.
The tests came back in the coming weeks, that Leah's
chromosomes were in fact normal. At that point, HPE,
would be her complete, yet still very adverse, diagnosis.
Leah's brain malformation had been diagnosed by MRI
as Alobar, which is the most severe type of HPE. The
diagnosis itself didn’t translate to an exact
prognosis for Leah’s survival. Doctors gave us
a general timeframe of 0 –6 months. They said
that her length of survival would depend greatly upon
the specific degree of challenges her body faced. They
shared honestly with us that Leah faced very intense
and severe challenges, and her life would be on the
shorter side of that range. Again, we were told that
most likely Leah would only survive a few more days.
We continued to love her unconditionally, accepting
her challenges and desiring to give her the best care
possible for her entire life.
Leah spent her first 9 days of life in the NICU. The
doctors ran tests, including an MRI, EEG brainwave seizure
study, and an ultrasound of Leah’s brain. Her
HPE diagnosis came to include the following challenges:
severe seizure activity, lack of pituitary function,
inability to control her body temperature, Diabetes
Insipidus and she would require a feeding tube. The
NICU staff was amazing, but they reached the point in
Leah’s care where there simply was not anything
additional they could do to help her. Her condition
could not be treated, and her seizure activity was increasing
daily beyond a healthy level. They predicted she could
survive only a few more days due to the stress from
the seizures. So, the NICU made plans to send Leah home
on Hospice care. We could bring her home and continue
the exact same level of care, including feedings and
medications that were helping to manage some of the
milder symptoms. We wanted to be with Leah for the remainder
of her life, in the comfort of our own home.
On March 29th, Leah came home!
It was wonderful seeing the love between big sister
Kyla and our little Leah. Luke was able to be home with
us the whole first week, which was a good thing because
Leah kept us plenty busy. For the next three months
we felt blessed to have the opportunity to care for
Leah. We excitedly put together her nursery and thoroughly
enjoyed making her a part of our lives. She went many
places and impacted everyone she met. Leah loved church
and all the attention she received from our friends
and family. My favorite memory was taking both my girls
to the park and library together. Kyla enjoyed giving
her sister “baby hugs and baby kisses”.
Leah’s favorite position was to be snuggled up
against her Mommy’s shoulder, which would quickly
put her to sleep. We cherished her every smile, every
hiccup, every yawn and even every cry!
Caring for Leah was very intense,
but a huge privilege as well! Her daily schedule included
tube feedings every three hours around the clock. Leah
received medication to help control her seizures (but
several hundred a day was still very intense), as well
as medications to replace the hormones lacking in her
body, and she received a very large dose of love from
Mom, Dad and big sister Kyla daily. Her seizure activity
increasingly interrupted her sleep, so she was awake
much of the day and night, needing our love and care.
God gave our family the strength to endure and function
on very little sleep the first two months. Hospice nurses
came for an hour visit once a week, to simply check
her vitals and share their amazement at how well Leah
was doing, considering her challenges. The final month
of her life, we were able to hire a nurse to come in
four nights a week to allow us to get some long overdue
sleep. Everyone was surprised that in her own way, Leah
was thriving. Leah was still Leah, with all her challenges,
but she was growing and responding to our love. I am
so glad that I decided to pump and feed Leah my breast
milk. She nearly doubled her birth weight in three months,
growing to just over 10 lbs. We joked that with all
her baby chub, it was obvious that one challenge she
did not face was lack of nutrition. Leah was so easy
to love, and we were honored to have the chance to realign
our lives to care for her.
We had prayed earnestly for
Leah’s healing here on earth, but God had a different,
yet sovereign plan. On June 27, 2009, Leah went to Heaven
and was eternally healed! She took her last breath peacefully
in her Daddy’s arms. There was an instant acceptance
in my heart that Leah was with Jesus and with that reality
God gave me a very real sense of peace. I also learned
that it is possible to experience both joy and sorrow
at the same moment. Even in Leah’s death, God’s
goodness and provision were clearly seen by our family.
We truly believe Leah’s survival for ninety-nine
days was our miracle! She had a greater impact for Christ
in her brief three months than most people have in their
entire lifetime. We are so incredibly proud of our “Leah
Sweet Pea-Ah”. Through our year-long journey with
Leah, starting with her conception, pregnancy, birth
and life, we learned to trust God day by day, and moment
by moment. We learned to cherish our daughter, and accept
the gift of her life, without knowing how long we’d
be allowed to enjoy her presence. We learned that with
God, it is possible to survive saying goodbye.
“Goodbye Leah. I’ll
always love you. I’ll love you here, and I’ll
love you there!” These were Kyla’s final
words to her baby sister, the night before Leah went
to Heaven. None of us knew that the very next morning
Leah would be “there”.
In receiving a poor prenatal
diagnosis, there is always room for hope! In both caring
for our special needs child and upon saying “Good-bye”
to our precious daughter, we never gave up hope! I’ve
recently read an impactful book called Holding On To
Hope, by Nancy Guthrie, in which she takes us by the
hand and guides us on a pathway through our pain –
straight to the heart of God. I believe the subject
of one's hope is what can bring strength and comfort
in the very face of despair and seemingly hopeless circumstances.
With our faith, trust and hope placed firmly in Jesus,
we eagerly await our reunion with Leah in Heaven.
"For I am convinced
that neither death nor life, neither angels nor demons,
neither the present nor the future, nor any powers,
neither height nor depth, nor anything else in all creation,
will be able to separate us from the love of God that
is in Christ Jesus our Lord.” Romans 8:38-39
The Jarmer Family – Luke,
Kristine, Kyla & Always Leah
(Please contact us if you are in need of support)
If your child has recently been
diagnosed with Holoprosencephaly, please visit the support
group, Families for HoPE at http://www.familiesforhope.org/
-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.