Day 2: We're Coming Home

   We got up even earlier this morning, and headed to the hospital to begin our day with another ultrasound, this time with the head radiologist. We also knew that the MRI results would be presented to us shortly after that first appointment.  I woke this morning with the full assumption that we were officially getting scheduled for surgery on April 21st.   After being discharged, we would be in a little room, with Ashlie bed ridden for a minimum of 3 weeks.

   I titled my first post about roller coasters. Today we kept that theme going.  Just to recap how this all got started, we went in for a routine twenty week ultrasound being told that our son, Ruger, has Spina Bifida. That he had a Chiari Malformation (where the brain is being pulled back to the point where it is connected to the spinal cord) and also had a lesion that began at S1 vertebrae going down to S5. Dr. Ball, one of the head specialists in Utah, and former MD at UCSF confirmed this diagnoses 1 week ago today. He referred us onto UCSF and we were on the first flight available.

   The ultrasound took way longer than it should have, I'm talking nearly two hours (not easy for a pregnant woman with pressure on her bladder). That is when the roller coaster started again. I want you to think of a time you went on a new roller coaster for the first time. The chain is slowly pulling you up to the top, the whole time you are wondering what is going to happen. Am I going to fly off the track? Will I throw up? What if my harness is not properly locked in? Then you get to the top, and you pause for just a moment, but it seems longer. Your heart is pounding and you just are not quite sure why you are there. Then the free fall, you are certain this is not what a perfectly healthy human body should be doing. Shortly after, you experience the bottom of the track, a hard turn, and you realize you are alive and that wasn't so bad.

    UCSF has some of the best medical equipment and doctors in the world for this birth defect, and they slowly delivered some remarkable news today. The lesion on our sons back is actually at an S2 (even lower than before) which means even more function of nerves in the lower body. We sat in a waiting room for 45 mins past our next scheduled appointment, while unknowingly, many doctors discussed our case. We already knew that an S2 lesion or lower, made us ineligible for the surgery. It is considered too low for the possible improvement, at least for them to take all the risk. The surgery is serious, hospitalizing the mom and almost always causing premature labor prior to 33 weeks.

   We met with Dr. Rand, we listened to him, not attentively at first, knowing he was going to tell us we were not eligible. Then he made us look up from our laps and had us asking a whole lot of other questions. The Chiari Malformation was not present in their findings, and the ventricles were normally sized.  We might be able to avoid even having to get a shunt and that was one of the biggest reasons for so badly wanting to get the fetal surgery. I was then told it is very likely my little boy will be able to walk, maybe unassisted, but certainly with braces. My little boy is going to be able to play golf with me.  My son will have some complication, but this "is the best case of Spina Bifida coming in for a surgery that they had seen in their careers."

Our emotions were just stunned. We were unsure how to feel. We went from walking in, expecting surgery, not seeing our daughter Charlie for a few weeks, and knowing this was the best option to possibly improve his life... to ....  we just hit the lottery of Spina Bifida cases, and you can go home soon. Dr. Ball did exactly what he should have and referred us on. We were dealing with the best of the best and have learned so much.

On our roller coaster, we still have crazy loops to go through and drops to experience. Ruger will still need to get a surgery 24 hours after being born, he will spend at least 10 days in the NICU. The likely hood of needing a catheter is great, and we will really not know if he needs braces until he is about 18 months. We will go to many, many doctor appointments for the next two years. We will fight insurance companies to cover treatment or devices.

No matter what those challenges are, we are very blessed. Ashlie and I will take them each on with a smile on our face and love in our hearts. We will be coming home on Monday! We cannot wait to see our sweet little girl and meet our incredible son in August.

I wrote a statistic in my post last night, 85 to 90% of California Spina Bifida cases are terminated! As Dr. Rand spoke, this statistic was now screaming in my head. We were given three options when we found out our diagnoses:

1. Terminate the pregnancy
2. Go to UCSF
      a. Get the fetal surgery, you will be a candidate
      b. Wait until the child is born, have the spinal cord closed at that time

There have been many success stories for a and b.


How many lives are "terminated"? How many could be living semi normal lives, and what really is normal!? And even if they were in a wheel chair or had complications, how do we know they could not have gone to another couple and had their whole world brightened? I wish I could answer these questions, I wish I could meet all the parents that will go through what we will.

I would like to thank those all that are donating to the fundraiser that my sister set up. We are still unsure how much this will all cost. But I swear this, every dollar that we do not use will be given to a Spina Bifida family or an organization in need. We will continue to pay it forward 10x over, to give all of these children not only a better quality of life, but a chance at life in general.

Thank you again for the countless prayers, they certainly have been answered.

With so much love,

Nick & Ashlie Smith