Opening the Door to a New Reality

The MRI was probably the most enjoyable test.  Mostly because I was so drugged up that I slept through most of it--waking only when I had to hold my breath.  Plus my dreams were all sci-fi--probably due the spacey nature of the tube.  Waiting for results were not as fun. At least with an ultrasound, I got to see images as they were being made.

A week after our follow up ultrasound, my husband and I headed to Seattle for a marathon day of appointments, tests, and MRI results.  At 10:30 we started with the echocardiogram--an ultrasound specifically for the heart.  I wasn't quite sure why we needed it.  Nothing abnormal with her heart showed up on past ultrasounds, so I only prepared myself for a routine echo to rule out bigger problems.  After all, I still held on to the fact that her nose defect would be an easy fix.  After looking at her heart at all angles, the cardiologist came in to show us the defect in my baby girl's heart. She has a hole in her heart that is technically referred to as a Subaortic Ventricular Septal Defect (or Double Outlet Right Ventricle).  This means that when her heart pumps, oxygen-rich blood mingles with oxygen-poor blood before the poor blood travels to the lungs.  This defect will cause her to tire out easily especially while feeding, rapid breathing, and could delay her growth.  Fortunately, it is one of the easiest defects to fix, and can be done at six months with one operation.

That last tidbit of info didn't sweeten the news that my baby has another defect.  Isn't one enough?  I wasn't prepared to hear the news.  I had no tissues, and spent most of the explanation time wiping my eyes and nose, and trying to stifle sobs.  Thanks to the nice drawings the cardiologist made I wouldn't be able to tell you a thing about it.

In stunned silence my husband and I ate our lunch.  It was a quick lunch before our 1:00 appointment, and I think we benefitted by not having time to talk.  There wasn't much to be said that wouldn't result in tears.

Our next appointment was the one that was supposed to tell me that our child's nose would be an easy fix.  One quick surgery after birth, and she would have a normal, healthy life.  And after the recent-shock I needed to hear it.  And perhaps our OB felt the same way, but instead with much gravity he explained the results of the MRI.

He began by explaining that his first opinion was that we had a simple defect.  But the MRI showed that the bump was actually made of neural matter.  And he gave us a fancy name that I could not remember or pronounce when we left the hospital.  He obviously thought that my husband and I were medical students because he threw a lot of terminology and explanations about chromosomes and syndromes that I could not repeat to you if I tried.  In more layman's terms he explained that the defect--encephalocele--was like spina bifida, where the body doesn't close around the spinal cord.  An encephalocele is found on the head where the skull doesn't close around the brain.  They can happen at the base of the head, or in the sinus area--which is where our baby's defect is.

What does that mean?  This is a very important question to ask when getting crazy medical information.   It is a question we will be asking for a long time even after our baby is born.  That day our doctor gave us two meanings depending on the chromosomal nature of the defect.  Depending on any existing chromosomal anomaly our baby could either die soon after birth or will need extensive surgeries.  After hearing about all she would need, I wasn't quite sure what the worst case scenario was.  Losing a baby sounded harsh, but subjecting her to a life of struggles and pain didn't seem all the great either.  Tears flowed easily and sobs were uncontrolled.  Everything sounded strange, new, and so foreign to the words I had programmed in my head to hear that day.

After the earth shattering news, I was prepped for an amniocentesis to find out if she would live, and to check for other possible syndromes.  This will all help in determining her care after birth.  After the news that day, I can honestly say that perhaps I was not mentally ready for the amnio.  For one who hates needles, this is the last thing I would ever volunteer to do.  In a way I did volunteer for it--all for the sake of valuable information.  If it wasn't for my fabulous husband, who encouraged and coached me through it, I probably would have demanded that the doctor stop.  For those of you who have never had the joy of an amnio, sticking in the needle isn't as bad as the pain when uterine muscle contract and pull on the needle.  In addition you have 24 hours of fearing that you could go into early labor because of it.  The doctor and nurse retrieved three vials of amniotic fluid, and when they left the room I let myself sob again.

The most relaxing part of the day was when a nurturing, grandmotherly nurse hooked me up to monitors for a Non-Stress Test.  I got to lie down and process my thoughts.  There were lots of tears from both me and my husband.  Lots of worry about the future.  But it was nice to lay down and see my daughter's healthy heartbeat (despite the defect) and her movements.  It was nice to relax, but that peaceful feeling quickly escaped as we shuffled to our car. After six hours at the hospital.

There were no good thoughts to be had.  We cried.  I felt pain every time my baby moved.  And I when I thought that I could lose her I lost all joy in her movements.  We have since learned the results of part of the amnio.  The good news is that she should live, and can have surgeries to fix her brain and nose.  However, we don't know if she has any other syndrome (we should find out in a week), and we do not know if this will happen to any of our future children.  Once again we have more information, but we still know nothing.

Let the mourning, coping, and understanding begin.