Meet Baby T

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. 

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.

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

Steph just starting to look pregnant in Aspen