Our Journey Begins

April 1, 2011

This Tuesday, March 29^th, I felt my baby for the first time.  Kim has been feeling him for several weeks (we do not know the sex yet and since I want a boy, I will call him him for now).  We were sitting in our OBGYN office waiting for a “special” meeting.  Kim had a call the Friday before and the message was that this appointment was scheduled – the doctor needed to talk about our ultrasound.  The sonographer had been having a difficult time getting good pictures of our baby’s heart.  We snapped a few pictures ourselves as we looked at pictures from the weekend out with friends while we waited for our doctor, who was running a little late.  She finally came in with the news.  It appears our baby’s heart was not developing correctly.  On Monday, Kim had a message from a Maternal Fetal Medicine (MFM) specialist with an appointment scheduled for Wednesday.  Our doctor was saying something about the possibility of an underdeveloped or undeveloped left heart.  I was not paying attention.  Our journey begins.

Wednesday, Kim and I went to the MFM specialist for a more in-depth ultrasound.  The result:  It appears to be a Hypoplastic Left Heart Syndrome (HLHS), a Congenital Heart Defect (CHD) that effects 9 out of 1000 of all births in the US.  The bad news is that 30 years ago, the mortality rate was virtually 100%.  The good news (if there is such and thing with this news) was that in the mid 1980’s, doctors developed a treatment for this problem, but before we discuss this with you, we need to be sure of what we are seeing.  You need to see a Neonatal Cardiologist – can you see him tomorrow, and, can we do an amnio something or other to get a chromosomal reading to know if this is just pure luck or a chromosomal related problem?  It does not appear that way since the only organ that appears to be effected is the heart at this time, but more info is better.  Sure – the more and the sooner we know, the better we can plan.

The amnio was simple – a quick needle through the stomach and into the uterus to extract some amniotic fluid.  We watched the needle on the ultrasound.  Suddenly, the baby was aware of the needle and a hand rushes up to inquire on the foreign object invading his space.  What a precious moment as we realize that our little one, roughly 23 weeks old in Kim, has enough presence to know that something had invaded his space.

With no complications, we returned Thursday for an echocardiogram.  After insuring the only effected organ was the heart, the doctor provided the most detailed and the first confirmation of what our baby was facing:  HLHS is the prognosis.  The left ventricle was non-existent, the left atrium was small and the right side of the heart was larger than normal while the veins and arteries around the heart also appear to be abnormal in shape and size – a standard associated with HLHS.  Prognosis – three surgeries:  first at the 5-10 day mark, the second at 6 months and the third between 3 and 5 years of age.  Chances of making it through the first surgery and to the second:  about 85%.  Chances of making it through the remaining surgeries and into adulthood reduces by about 3-5% from there.  The good news:  80-85% chance of living is much improved from 0% in the early 1980’s and if our baby makes it to the first surgery, chances are he will have a somewhat normal childhood and could live long enough to see grandchildren.  That is speculation since the oldest people born with this condition right now are in their mid 20s.

Kim and I are trying to absorb the last 3 days of news.  The reality is that the doctors are likely not wrong and our baby will be very sick at birth.  Our hope for a healthy baby at birth is shattered.  The truth Kim and I hold onto is that we have a Creator who knows the number of hairs on our baby’s head before we even new we were having a baby and in the end, whether our baby lives or goes to see Jesus, God is still God and God is still in control and we will still believe and worship Him.  Our faith has not been shaken nor will it be shaken by this.  Our faith was our faith before this knowledge and God will still be God after this challenge passes (if such a time comes).  We are excited to meet our baby, to know him, to learn about his likes, his talents and desires, what he will not like and what challenges he will bring and what his personality will be.  But this we know, as for us and our house, we WILL serve the LORD!

Brian