For those of you who may not be familiar with what exactly has been going on for the last seven months, I realize I left you hangin’ with the first blogpost.  Now that I have “set the stage” for the blog, we’ll take a trip down memory lane to assure that everyone is on the same page so we can move forward.

Please click on this link to see where our story began:  Welcome, Baby Abdelahad!

Charles showed that video to his family around March 21st.  On March 24th, I wrote a birthday poem for my brother and surprised my family with this picture frame:

A few weeks later, at our 12 week appointment, the Ultrasound Tech saw something unusual on the ultrasound.  What she found is called a Cystic Hygroma (which is a growth that often occurs in the head and neck area, more than likely due to a heart defect that causes fluid to build up around the baby’s neck instead of being processed efficiently by the lungs to circulate throughout the body).  The doctor immediately wanted me to undergo a blood test (the Harmony Blood Test) to check for four possible conditions:  Trisomy 13, 18, 21 or Turner’s Syndrome.  (This post will be more fact based – I’ll write the emotion-based one later.)  My doctor also then subsequently referred me to a specialist that I would see the following morning at 8am.  (Did I mention this was Holy Thursday/Friday?)

On the morning of Great and Holy Friday, Charles and I were at Baptist East seeing the specialist.  (I’m not sure if I’m allowed to post names on the internet, so we’ll refer to the specialist as “MFM” for “Maternal Fetal Medicine” and my primary OB as “POB”).  The MFM confirmed what the POB had seen on the ultrasound just a daily earlier:  yes, there was a cystic hygroma but we would need to await the results of the blood test to verify what was causing this issue.  The rest of our time with MFM was primarily an informative and counseling session.  He explained the possibilities of what the hygroma could indicate and presented us with our “options”; this included continuation or termination of the pregnancy.  (I mentioned following up with my “feelings” in another post, so I’ll be sure to comment on that later.)  We really enjoyed meeting with MFM, even though the topic of conversation was…well, it was a lot of things.

Finally, after a grueling 12 days of waiting for the blood test results, we met with POB again to review the results (happy Derby Week to us!).  POB reported the results of the blood test:  they concluded that there was a 99.9% chance that our baby would have Trisomy 18.  (Thanks to my best friend and resident pediatrician, Kate, who took us out for ice cream that night to translate the lab results into English!)  At the appointment, POB also revealed that said baby was a girl.  (Hang tight folks — feelings come later!)  POB, like MFM, presented us with our options of continuing the pregnancy course or terminating at this time.  Both MFM and POB confirmed that there would be no additional risks (just those of normal pregnancies) to me as the mommy to continue to carry the baby.  We were also told that 95% of these cases end in a miscarriage before 16 weeks (we were at about 14 at this point).  The takeaway at this point in our journey was that we would probably miscarry soon.

By the end of week 15 we had not miscarried so we saw MFM again to get a better look at the baby’s anatomy (mainly her heart, since that’s the biggest concern with T18 babies).  Overall, MFM could not see any major physical defects — WAIT, say WHAT?!  So, MFM, what you’re saying is…the heartbeat is strong and there are no major physical defects (really any, actually, that he could see at that time) except MAYBE a hole in the heart?!  (Lots of babies are born with holes in their hearts, right?!)  At this point, we were presented with the option of having an amniocentesis (the sampling of amniotic fluid using a hollow needle inserted into the uterus, to screen for developmental abnormalities in a fetus).  There is a long story of how we arrived at our decision to perform the test, but all of the pieces we needed to make this choice just completely fell right into place (imagine that).  

At the end of week 16, MFM performed the amnio.  Charles enjoyed watching the process, and I enjoyed closing my eyes and gritting my teeth (just in case it hurt!).  MFM told us it would take about 12 business days for the results of the test to come back.  In the meantime, we celebrated the best brother and sister-in-law in the WORLD at their WEDDING (little did everyone know, I was almost 18 weeks pregnant at that point)!

The Wednesday after the wedding I got a call from MFM on my way to work.  He confirmed that there indeed was a third copy of the 18th chromosome in our baby girl’s DNA.  By its official definition, Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction.  Trisomy 18 occurs in about 1 out of every 2500 pregnancies in the United States, about 1 in 6000 live births (courtesy of the Trisomy 18 Foundation).  Another way we had heard it described was that the condition is “incompatible with life”.  At that point in time, and also at this point in time, we had/have no idea how long we are going to have with our baby girl.  

From the end of May until now, I have continued to see POB and MFM to go through regular prenatal care/check-ups, supplemented by visits with MFM to see what’s really going on in there.  Currently, we are 30 weeks pregnant (well, as of Wednesday) and this baby girl just keeps going, moving, and fighting.  There is A LOT MORE to come so stay tuned!  And stay praying!