Today was our consultation with specialists at Children's Mercy to learn the results of last week's fetal MRI.  We met with a team of six people: a neurologist, a neonatologist, a genetic counselor, a social worker, and two nurses (one who specializes in neurosurgery and the other neonatal).  It was a bit intimidating and I'd be lying if I said the "team" didn't worry us a bit.  We started with the genetic counselor who recorded our family history and I think this part scared us the most.  We were definitely prepared for the worst.

However, we felt very relieved when leaving the hospital.  We learned that our baby has a very mild case of hydrocephalus (and this is definitely not due to spina bifida).  The neurosurgeon was very optimistic, and said that, based on the MRI results, there's a 70% chance he won't need post-birth surgery to insert a shunt.  He also said the part of the brain that's adjacent to the excess fluid looks great.  (The issue arises when the fluid pushes on the brain and causes the brain to become smaller/less developed than it should.  This is not the case with our baby's.)  The neurologist said that our baby is no more at risk for developmental issues than a baby with "normal" fluid levels.

Of course, there's always the possibility that the fluid level will increase, which could cause pressure on the brain.  We go for another level 2 sonogram on Monday and I assume the specialist at Shawnee Mission Medical Center will continue to monitor this throughout the rest of my pregnancy.

After the baby is born, Children's Mercy will work with Shawnee Mission Med to do further testing on the baby's brain (ultrasound and MRI).  These tests will determine 100% if our baby needs a shunt.  Like I said earlier, the neurosurgeon suspects only a 30% chance of this.  In the case that Baby Sides does need one, the surgery isn't something that needs to be done immediately after birth.  Typically, they occur after being released from the hospital where one delivers.  Recovery time for babies with these surgeries is about a week.

Even with a shunt, the doctors suggested that our baby can live a very normal life.  Contact sports may become an issue later on in life, but that is definitely something we can deal with!

We will likely have to visit Children's Mercy regularly for the first few years of Baby's life (shunt or no shunt) so they can monitor the brain and make sure things are progressing like normal.  We also have to closely monitor his soft spot early on in life, as a "blown up" soft spot could indicate increased fluid levels.

Of course, the doctor said MRIs can't predict the future; therefore, he can't tell us 100% that our baby will be "normal".  But, he said that is the case with all babies.  Until they see their cognitive developments through the days, weeks, months, and years, they never know how a baby will turn out.

We are very, very thankful for the encouraging news and truly appreciate all of your thoughts and prayers.  Of course, there is still some unknown and we would be grateful for continued prayers throughout this process.  We love you all! :)

1 comment:

  1. So glad your appointment went well! I hope you continue to feel good for the rest of your pregnancy and your little man comes out healthy and happy! :) One thing I was going to mention to you, is after we had Zay and found out his PKU he was eligible to have Early Access monitor his development. (Even though his prognosis was to develop perfectly normal, since he had a genetic condition the help was there if we wanted it) The early childhood teachers and occupational therapist came right to our house to see him! It put me at ease to hear each month that we was right where he needed to be or even advanced developmentally! Helps put a first time mom's worry at ease! Maybe there is something like that where you live and is an option...just a thought! :) Take care!!