Life With Ty #4 - A Defining Moment

A Defining Moment

As a part of the 31 for 21 blog challenge, once a week some writers choose to write about a common topic.  These are some of my favorites to write and read, because it forces me to really think about my opinion on a specific topic that is important in the Down Syndrome community, but it also gives me the chance to read and learn others' opinions on the same topic.  It kind of broadens my perspective to see the varying viewpoints and values that all ultimately believe in the same goal. 

So this week, the common topic is "A Defining Moment"; a moment in my life with Down Syndrome that has changed my perspective in some way.  The interesting thing about this topic is that there are hundreds of moments just like that.  See, as time goes by, a person's perspective of Down Syndrome does change.  You enter the journey not knowing much about Down Syndrome, with a lot of fears and questions.  Over time, as you get to know your child, those fears ease up a bit, and you realize you have a baby who in most ways really is "just a baby".  Eventually, you reach a point where you feel comfortable, even empowered by Down Syndrome.  You learn to advocate for your child and be proud of who he is in every way.  So to narrow down those moments along the journey to just one "defining" one is nearly impossible. 

My first, and probably most significant "defining moment" though, took place before Ty had even made his way into this world.  Many of you know about my turbulent pregnancy with Ty.  From 20 weeks on, my baby was diagnosed with numerous medical conditions, many of which were unfamiliar, dangerous, and downright scary.  It started with the diagnosis of a heart defect - a "hole" in his heart that we were told was moderately-sized, and would likely require surgery by the age of 6 months.  Next, Ty's size was diagnosed as being "small for gestational age", as he measured in just the 3rd percentile at 28 weeks.  This diagnosis, which landed me on bedrest, was soon followed by the discovery of "chylothorax", or fluid in the chest cavity that surrounded his right lung.  As if that weren't enough on a new parent's plate, the doctors also discovered that his brain ventricles were enlarged, which signaled fluid on the brain.  Coupled with his large head circumference, he was suspected to have Dandy Walker (a malformation of the brain, causing significant physical and cognitive impairment), as well as craniosynostosis, the premature fusing of the plates of the skull, requiring surgery to separate after birth. 

Despite the doctors' persistent asking, we declined having an amniocentesis to determine if Ty had a chromosomal abnormality.  The procedure, which involves inserting a needle through the abdomen into the uterus and amniotic sac, would have most certainly caused premature labor at that point in my pregnancy, and I refused to compromise my baby's health any further by adding "prematurity" to his list of medical conditions. 

My "defining moment" happened when I was 35 weeks pregnant.  Large, terrified, and emotionally drained, I went to the local children's hospital to meet with a neonatologist in the hospital's NICU.  I remember walking into the neonatology unit, alone because Eric had to work, trying to come to terms with the fact that my baby would likely be spending his first weeks or months there.  I sat down with the doctor in his personal office, door closed, ready to absorb the news he was about to give me. 

I was pretty emotionally numb at that point in my pregnancy.  I had heard devastating news week after week for months, and literally did not have anything else to give.  Sitting across the desk from the doctor, I felt like a child in the principal's office, not wanting to hear whatever it was he had to say.  I listened as he reviewed and analyzed all of Ty's medical conditions.  He rattled off the myriad of problems Ty would most certainly have at birth - little to no respiration, heart difficulties, feeding difficulties.  These were quickly followed by the numerous surgeries he would need to correct his defects - open heart surgery, a catheter in the chest, surgery on his skull to separate his plates.  He also told me Ty most likely had a chromosomal abnormality.  I distinctly remember asking, "like Down Syndrome?"  And his response, "Well yes, Down Syndrome is a chromosomal abnormality, but the baby's symptoms don't 'fit' with DS. It's most likely something else, though I can't speculate what because his symptoms are so unusual paired in this way."  I remember thinking, "great, another non-answer". 

Finally, exhausted, I just came out with the question that everyone was thinking, but no one was saying, "Is my baby going to die?"  It was the first time I had acknowledged the possibility out loud, and I wanted to run out of the room before I heard my answer.  His response, "No, nothing that we know about your baby leads us to believe that he will not make it."  And that moment - the point when I had reached my absolute lowest - was my "defining moment".  I had avoided asking, even thinking, about my son's possible tragic outcome, but it was exactly what I needed to know in order to come to terms with what we were facing.  It was like a massive weight was lifted from my shoulders.  At that moment, all of my energy and fight came back.  I realized that as long as I had my son in my life, it really didn't matter what diagnoses he brought into the world with him.  If I had my baby, I had someone to fight for.

This "defining moment" was what allowed me to accept his diagnosis of Down Syndrome so easily, really without batting an eye.  I had come face to face with the darkest of possibilities, so a tiny extra chromosome was nothing in comparison.  That was the moment when I decided to tackle whatever we were facing head-on, rather than feel sorry for us or our baby.  I don't think I've ever looked back!

*********************************************************************************

For most of you who know Ty, you know that ultimately, he was born completely healthy.  Except for small heart defects that corrected themselves, not one of Ty's prenatal diagnoses were present at birth.  He never visited that NICU that I had toured in the children's hospital, never had trouble breathing or eating, and never needed any surgeries.  He was our miracle baby, for sure!