Family & Friends,
We write to you today to first of all express our joy in
being pregnant and the miracle of new life. In April Stephanie and I found out that we were pregnant and
were quite surprised when the due date calculator said December 24! Stephanie at first didn’t believe that
she was pregnant. She on several
occasions said “I don’t believe it, I don’t feel any different.” Fast forward
two weeks to Stephanie kneeling over the toilet; she suddenly felt very
different. We heard the heartbeat
at week 8 and it was confirmed, pregnant.
At our 16 week appointment we were asked to do a simple blood test and
the result showed slightly abnormal so we were scheduled for an ultrasound. While we had been praying for a healthy
baby we learned that our baby has Spina Bifida, an open neural tube defect that
develops in the first 4 weeks of life.
It was devastating and shocking news for us to hear to say the
least. The last 3 weeks have been
a whirlwind of education, appointments, and travel. We write to you to share our journey and ask for your prayer
and support.
Our initial ultrasound showed signs of hydrocephalus, excess
fluid on the brain, which is a condition associated with SB. This past week we had a follow-up
ultrasound and were able to see the spinal lesion at L2. In spina bifida a portion of the neural
tube that later forms the spinal column has a defect. As the baby develops a sac containing spinal fluid is
located outside of the vertebral column.
Nerve damage is often associated with the disease leading to
difficulties walking. At this
point we don’t know the severity of the condition. We do know that the baby is an active kid, just like mom and
dad. On ultrasounds he is moving a
lot, legs and feet included which is a good sign (we think it’s a boy for no
particular reason, we haven’t found out gender). The hydrocephalus condition was classified as mild to us
which is encouraging.
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Ultrasound view showing defect in top left |
Typically a baby born with spina bifida receives a shunt in
the brain to drain the excess fluid and must have surgery on the back to place
the spinal cord into the correct location. In the mid 1990s a ground of doctors began performing
surgery on babies in utero to repair the spinal lesion. A clinical trial was conducted between
1998 and 2010 and showed such promising results it was stopped early and the
treatment has become more common.
Our goods friends Lauren and Joel Steidl are from Nashville, home of
Vanderbilt University. They
introduced us to a physician at the University connected to the SB community
who facilitated our contact with the fetal surgery team at Vanderbilt. We traveled to Nashville this past
Friday and met with their team. The
fetal surgery team at Vanderbilt pioneered the procedure and has performed over
200. They felt we were good candidates
for the procedure and after much thought, prayer, and deliberation we have
decided to move forward with the fetal surgical repair.
This is certainly a huge procedure that involves surgery on
two people at the same time. The spinal column defect will be repaired and the
skin grafted where the defect existed.
There is certainly a long list of risks but the babies that have
undergone the procedure have had significantly better results in terms of
shunts and motor function so we feel we are giving our baby the best chance at
life.
Stephanie and Baby T are scheduled for surgery on August 21,
yes two weeks from today. The best gestation time for the surgery is 22-24
weeks so we are moving forward quickly.
It has been a whirlwind of emotion for us over the last few weeks and
certainly there are many trying times ahead. Besides the risks of surgery on mom and baby, Stephanie will
be placed on very limited activity for the remainder of the pregnancy. She will be taking a leave of absence
from her job for the remainder of the school year. The hope is that by staying at home primarily laying or
sitting down the baby will keep growing and doing his thing as far as possible
into pregnancy. Stephanie will
deliver by c-section in Denver hopefully in the 35-37 week time period meaning
our Christmas baby is now going to be a Thanksgiving baby.
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Baby T hanging out at the pool |
We are very thankful for the surgical team we have come in
contact with and our ability to quickly develop what we feel is the best
possible treatment plan. We are thankful
for all of the support family and friends have already given. We are thankful for this life “wonderfully
made” by God. We are excited to take our baby on hikes, camping, bike rides and
to do all the things Coloradans do with babies. We realize that life might be a little bit different for us
than we had hoped but we are fighters and our little guy will be a fighter too.
We ask for your continued prayer and support, especially on
August 21 as Steph and Baby T undergo surgery. Stephanie will be holed up at
our house in Denver for 10+ weeks so any visitors wanting to keep her company
are gladly welcomed.
To keep everyone updated as we progress through this journey
we have created a blog which can be found at SiloamPool.blogspot.com. We will do our best to keep this up to
date so you can be aware of all that is happening and know how to best support
us. We apologize if we haven’t
been the most communicative in the past few weeks. It’s been overwhelming and exhausting for us having the same
conversation what seems like 100 times a day.
John 9: 1-7
As he went along, he saw a man
blind from birth.2 His disciples asked him, "Rabbi, who sinned, this man
or his parents, that he was born blind?"
3 "Neither this man nor his parents sinned," said Jesus, "but this happened so that
the works of God might be displayed in him.4 As long as it is day, we must do the works of him who sent me.
Night is coming, when no one can work.5 While I am in the world, I am the light of the world."
6 After saying this, he
spit on the ground, made some mud with the saliva, and put it on the man's
eyes.7 "Go," he told him, "wash in the Pool of
Siloam" (this word means "Sent"). So the man went and washed,
and came home seeing.
We thank you for your prayer and support and may God be
glorified through this situation.
Kyle & Steph
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Steph just starting to look pregnant in Aspen |