Friday, June 29, 2012

Spina Bifida Diagnosis

Hey Family and Friends,

Yesterday was a big day for our new family! We had the opportunity to go to the Utah Valley Maternal Fetal Medicine clinic to have an ultrasound of our baby. My understanding, going into the appointment, was that I was there because my blood tested high for the Alpha-fetoprotein (AFP). AFP is found in the baby's blood. If there is a neural tube defect in the baby then the AFP may leak into the amniotic sac and consequently into my blood. Since my blood tested high in AFP the doctors knew there was a higher chance of my baby having an open neural tube defect.

We got to watch our baby on the ultrasound for over an hour. First there was a sonographer who took measurements and showed us many parts of the baby (including the little boy part!) and then a doctor came in to run through the ultrasound again--this time giving us a diagnosis for the measurements and things he noticed. As it turns out, our little baby boy has spina bifida with hydrocephalus. To make a long story short, he has a gap in his spine and extra fluid in his brain.

To hear the long story, continue reading: The first observation the doctor made of our baby was his brain--our baby has two ventricles in his brain that measure larger than normal (we knew our baby would have a big head). These spaces show dark spots which are full of excess fluid. The doctor anticipates these ventricles will continue to grow which will result in the need for a shunt (tube) to be put in place to drain the extra fluid to somewhere else in the baby's body. The implications of hydrocephalus vary depending on its severity and will remain unknown until the baby is born.

Another thing our doctor took a look at is our baby's spine. Typically the bones in the spine form into a triangle /\ shape around the spinal chord to protect it. In the lower (lumbar) region of our baby's spine there are a few places where the bones formed more like a "V" and the skin is missing, leaving the spinal chord exposed in this place. SO...our baby will need surgery shortly after birth to correct his spine and cover the area of skin to prevent any further nerve damage. Due to the current spinal chord exposure there could be paralysis or nerve damage affecting the area under the spina bifida. This usually means there will be difficulty walking and problems with bladder control. Of course the full implications of spina bifida will also remain unknown at least until the baby is born or tries to walk. On top of that our baby has two little club feet right now. This can also usually be corrected with stretching/casting/surgery. I will most likely deliver my baby boy at the University of Utah under close watch of several doctors including the pediatric neurosurgeons who will perform the surgery.

It's true we're a little surprised and sad about all this news, but Isaiah is helping me to have a really positive outlook on the whole situation. There are so many blessing we've had and will continue to have during the next few months and the rest of our lives. We are fortunate to be relatively close to Primary Children's Hospital which has an excellent spina bifida clinic. I imagine we'll become close with the doctors and therapists there throughout our baby's life. We are also blessed that we decided to NOT buy a house this year. We are renting for another year (at least) in our current ward which already knows us and will be very supportive. We are blessed to be so young with lots of opportunities to have more children in the future. We are excited for what we will be able to learn and do with ALL of our children. We are most of all blessed to have supportive family members who will love us and love our baby more than any baby has ever been loved before. Thank you so much for your prayers and fasting and temple attendance in behalf of our family. We know the Lord is giving us this baby because we will be the best parents for him and he will be the best child for us right now. We already love him so much!

We love you too!

Jenna and Isaiah and Baby Hudson

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