A Lil' Boy's Journey to Live….

Archive for January, 2008


I had an Amnio.  All of the results came back normal.  The doctors believed that the results were going to be normal, but in order to proceed with their plan of care, they needed to be sure.  The pain and discomfort of the Amnio were worth it for the little bit of good news that it brought.

Up to this point

Up to this point

As of today I am 27 wks. pregnant.  We found out in August that I was pregnant.  The first 5 months were very uneventful.  My OB appts. were all good.  The heart was good, and I was feeling good. 

At 19 wks. I went for my first ultrasound.  They said everything seemed ok, but they couldn’t get all of their images.  They suggested for me to come back in a couple wks.; when I was a little further along.  So I went back at 22 wks., and again they said that they were having trouble seeing all of the views they needed.  At this point it was time for my next OB appt.  He decided to send me for a level 2 ultrasound at the ATU at Virtua Hospital.  He said that a level 2 was very detailed, and that they would be sure to see everything that they needed.  At 23 wks. I went for my level 2 ultrasound.  This appt. would change everything.  The doctors at the ATU told me that they were suspectful of Heterotaxy Syndrome.  They explained what they believed to be wrong with the baby’ heart and abdomen.  The doctors wanted me to come back and have a fetal echo ASAP.  I scheduled my echo for a couple of days later, and in the mean while reached out to Children’s Hospital of Philadelphia for a second opinion.

When I returned to the ATU at Virtua for my echo, there DX was the same.  The Ped. Cardiologist that I saw was not very hopeful.  He said that the condition that the baby had was rare, and that they did not have much success with it.  He gave a 50% survival rate for the first year.  This was hard news to accept!



Two days later we headed to CHOP for our second opinion.  I had another ultrasound and echo.  This was an all day process that ended with us meeting with a team of doctors.  This team included an OB, Cardiologists, Surgeons, nurses, and some people that I wasnt quite sure who they were.  Their findings were pretty much the same as the doctors at Virtua, but they had a plan of care.  They also gave us a 75%, maybe even 80% survival rate.  This % compared to Virtua’s made us feel like they may be some hope. 
After meeting with Chop, I transferred all of my care there.  I will continue the rest of my OB appts. there, where they will closely monitor me and the baby until delivery.  I will deliver at University of Pennsylvania, and they will take Riley from there over to CHOP at their Cardiac NICU.  It is going to be a very rough beginning.  We are not even sure, exactly how thing are going to go.  We do know, though, that he will need heart surgery within his first 5 days to put a shunt in.  He may actually need heart surgery within the first 24 hrs., but we won’t know until after he is born.  We also do not know if he will need surgery on his abdomen.  If it is just reversed, he wont, but if his intenstines did not form properly, he will.  If he does need the abdominal surgery, it will take place after he is stable from his heart shunt procedure.  Also his CCam will need to be removed, but they believe, at this point, that it will stay small and will not need a seperate surgery.  If this hold true, it will be removed during one of his other surgeries.
As you can see there are still alot of unanswered questions.  All we can do at this point is pray for the best, and try to prepare for whats to come. 

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