Our Journey Begins

We truly appreciate all the outpouring of love, concern, and offered prayers for Shawn and our family that we have received from friends and family over the past few weeks.  It really has helped us weather this storm.   The main reason for this blog and email list is to give all of you updates about little Shawn as we forge this path down the road of HLHS.  We will do our best to try and post as updates come to us.

Let us start at the beginning of this journey and I apologize for the novel here, but there's a lot to update.  It was just another 20 week ultrasound.  We were so excited to finally find whether the baby would be a boy or a girl.   We had the technician put the sex of the baby in the envelope as it was our plan to open and reveal at dinner that night.  From our untrained eye and the technician's remarks everything was looking and measuring on track.  When we spoke with our OB doctor he confirmed that everything was good but they didn't get a good look at the heart and he wanted us to go for a high resolution ultrasound at the hospital.  We were told this is customary.  Babies tend to move around in there (a lot in our case) and it's tough sometimes to get a good look at everything.  We didn't think anything of it after that and were anxious to get to dinner and open that envelope!  We had a nice relaxing night out and when we opened the envelope we were ecstatic to find out we were having a boy!  Neither Beth or myself have any siblings of the opposite sex so we were excited to watch that dynamic and relationship development between Zoey and her new little brother.

A week went past and we showed up to the high res ultrasound ready to knock it out and move on.  This ultrasound was like all others except when the Maternal-Fetal doctor couldn't find all four chambers of the heart.  She left and came in with a textbook and started reading to us about the possibility of  Hypoplastic Left Heart Syndrome.  The words hit us like a ton of bricks.  We were both devastated and terrified by what the doctor was telling us.  From what the ultrasound was showing our little guy had a severely underdeveloped left side of his heart.  Basically he would be born with half of a heart.  This is an extremely rare and complex congenital heart defect and the doctor didn't know much else about it. We were asked to come back in two days and see a cardiologist from Riley Children's Hospital for a fetal echocardiogram.  The next 48 hours  were grueling.  Filled with endless research on the internet but with all the maybe's and potentials we just ultimately switched to denial.  Our hopes shifted to the doctor being wrong and we'd go to the echo and everything would be fine.  The echo proved the opposite and all our fears were realized when the pediatric cardiologist Dr. Anne Farrell (see her profile here) confirmed the diagnosis that our precious baby did indeed have Hypoplastic Left Heart Syndrome.

What happened over the next couple minutes as Dr. Farrell spoke surprised us.  We were no longer in despair, no longer in the grips of the unknown.  We knew our enemy and Dr. Farrell was giving us the weapons to fight.  She spoke of the three stages of surgeries that we will outline in another post.  She spoke about Riley Hospital and the fantastic things they are doing there for sick children.  She gave us hope.  We came out of the appointment emotionally exhausted but also feeling somehow renewed.  There was no doubt this journey will be difficult but now we know to steel ourselves for the tribulations to come.