Our Down Syndrome Journey

Nick and I had been married about 2 years when I found out I was pregnant with Lila.  It was a complete surprise- I had been feeling a little "funky" for about 2 weeks so I decided to take a test.  I actually bought 4 different kinds of tests, just to make sure I was going to get an accurate result. 

The first test came back positive. As did the second.  As did the third.  Seriously, I just couldn't believe it so I kept taking them.  I was pregnant!  Surprise, surprise!  I had two grown kids- Tiffani was a sophomore in college and Justin was a senior in high school!  Wow!

I started having problems in my pregnancy almost right away.  At 5 weeks, they thought I might be having a "tubal" pregnancy but after an emergency ultrasound they found that there were problems with my placenta.  At 11 weeks I had a pre-natal test called a nuchal translucency and the results came back with a 1 in 5 chance of having a baby with Down Syndrome.   Our OB, who shall remain nameless, automatically assumed that I would want to terminate the pregnancy and asked me when I wanted to schedule the termination.  We told her that we were keeping the baby.  She insisted that we "must" want to terminate given that a child with Down Syndrome would be a burden on us, our family and society.  We found a new OB.

Time went on, and there were more complications.  We were assigned to a team of perinatalologists for our high risk pregnancy.  We requested an amnio and found out at 16 weeks gestation that our baby was a girl and she had tested positive for Down Syndrome.   We named her right away.   We named her Lila, in honor of my mom.  (We had decided early on in the pregnancy that if we were having a boy, he would be named after Nick and his dad and if the baby was a girl we would name her after my mom.)  Lila had a lot going on!  She had a heart defect, a problem with the kidneys, IUGR, duodenal atresia, the list goes on and on.  It seemed like every time we went to the doctor there was a new health issue.  At around 27 weeks gestation, after being a VERY active baby, she stopped moving.   We went in for our weekly appointment and after the sono, the doctor came in and gave us the not-so-great news.  There was basically nothing that could be done.  If this were a normal pregnancy and Lila were a healthy baby, he would call for an emergency C-section right away.  Unfortunately, he told us, Lila wasn't a healthy baby and there was nothing he could do.  Lila's best chance for survival was inside of me.  He told us that he was sorry, and basically tried to prepare us for losing our baby. 

That wasn't working for us.  We called our parents from the parking lot of the doctor's office and asked them to pray with us for the health and survival of our baby.  2 days later, she started moving again.  We were so thankful.   Fast forward through a bunch of OB appointments, appointments with a surgeon, NICU tours, hospital visits and one hospital stay, Lila was born at 36 weeks gestation.  She weighed in at 5 pounds, 5 ounces.  There was an entire team from the NICU in the room, and they took her right away. 

Lila had surgery within 24 hours of her birth to correct duodenal atresia.  Back into the NICU she went, and there she stayed until she was 7 1/2 weeks old.  The day we brought her home is a day I will never forget.

Lila is now 4 1/2 years old.  She has had a very minor heart procedure, her tonsils and adenoids removed, and 3 sets of tubes placed in her ears.  Recently, after having recurrent infections for about 6 months, we found out that Lila isn't making her own antibodies.  Thankfully, she is able to receive them from an outside source  She goes for monthly IVIG treatments where she gets to watch movies and is treated like a princess.

Lila currently attends two different preschools- one is public and one is private.  She goes to Occupational Therapy once a week and Speech Therapy once a week.   She also takes gymnastics and ballet.  She loves playing with her friends and being outside.  She is a sweet, feisty, sassy, funny and affectionate little girl. 

She is loved beyond measure.