Tuesday, August 4, 2009

Open Letter to Friends and Family (in process)

Dear Friends and Family,

For many months I have been planning to send out a letter like this, but have been hesitant to do so until we got more answers. Amanda and I just returned from St. Louis where we visited with doctors and surgeons at Barnes-Jewish Hospital and St. Louis Children’s Hospital. Each week since March we were one week away from another test that might shed light on what was going on with our unborn child, Bayta.

On March 1st while having a standard ultrasound performed, we found out that our unborn child has a rare condition known as Gastroschisis. (Pronounced GAS-TRO-SKI-SIS) The good news was that there is an 85% survival rate for children born with this condition. There are also no (or few) long term side effects provided the baby survives the birth and first few weeks or months in the NICU. (Neonatal Intensive Care Unit)

While we were of course devastated, the medical staff assured us that it could always be worse and that we were lucky our child did not have another condition called Omphalocele. Omphalocele is often associated with severe genetic disorders including Down Syndrome, congenital birth defects like cardiac, kidney, spine and lung deformities, and premature death.

On May 19th we had another ultrasound. This one let us know that in October we will be the proud parents of a baby girl. However, the doctors at that time changed our diagnosis from Gastroschisis to the dreaded Omphalocele.

As you can imagine this has been a difficult for Amanda and I. We are used to being in control of our environment and our world. We have also lived very charmed and uneventful life with our first two children Harrison (age 4) and Jackson (age 2). From the time we found out about the diagnosis we have read and researched everything we could on Omphaloceles. We have posted some informative websites on our blog if you want to know more about this condition.

This pregnancy has not been without its good news. The results from an amniotic fluid test eliminated the possibility of many genetic disorders. Because of the high risk nature of the pregnancy we probably have more pictures of our daughter in utero than we do of our sons. So far the evidence is not pointing out any obvious damage to the heart, kidneys, stomach, lungs, brain, face, and limbs. (Unfortunately every time we get a good review the doctors immediately follow it up with “but we might have missed something.”)

The fact that we are still a functioning family is a testament to the support we have received from our friends and families. When we first found out about her birth defect we were sponsoring a bible study group in our home that helped reinforce our faith. God has always been good to us, and blessed us in ways we can not even fathom. Amanda was able to return to her job at St. John’s Hospital which allowed us to have less expensive insurance with better benefits. The initial estimates are that this baby will cost close to a million dollars before she leaves the NICU.

After hearing about our little girl, the first thing people want to know is how they can help. The only thing we can ask for is your prayers. If that isn’t enough, please feel free to make a donation to Ronald McDonald House. They are truly a blessing for families like ours with seriously ill children. I will create a website shortly where I will blog about what is happening so Amanda is not asked to “tell the story” again and again.

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