Tuesday, August 11, 2009

From Mourning to Dancing: Part III

From Mourning to Dancing: Part II

August 31st, 2005

Many doctors appointments and ultrasounds later, minutes began to feel like hours and days like weeks. It all felt so surreal. Like a dream. Time stood still as it whizzed passed.

One of the ultrasounds was actually an echocardiogram, to take a closer look at the heart. Originally ordered after the initial u/s (the one showing a possible hole in the heart), it was canceled after the Trisomy 18 diagnosis. Canceled. Without checking with us. This was the first of what would be many instance of the medical community giving up on our son. Why probe further when the outcome will be the same? Why waste time and resources on a baby who is essentially already dead??

From the beginning it was clear that most doctors had very little -if any- experience with babies with Trisomy 18. What they knew, they had learned in textbooks. Textbooks that told them that these babies had NO CHANCE of life. Textbooks that instructed them to advise their patients to terminate. When most parents are faced with a list of defects as long as their arm (as we were) and the doctor -the PROFESSIONAL- sitting across from them is describing their baby in a way that makes them afraid to see it, many of them do choose to terminate, which leads to even fewer instances of real-life, practical experience with Trisomy 18.

We weren't prepared to give up that easily.

When I learned that the echocardiogram had been canceled, I called the office and made it clear that we wanted all of the tests available in order to be fully prepared for our son's birth. They agreed and rebooked for a few weeks later. The echo wasn't terribly useful in telling us anything we didn't already know (he had a small VSD (Ventrical Septal Defect), but it was not big enough to even require surgery in an otherwise healthy child), however it did afford us another chance to see our son and to meet with the perinatologist -as biased as he was against continuing with the pregnancy- and ask a few more questions.

Regarding the baby's heart defect and kidney problems, the doctor was clear that neither of those issues would be our son's cause of death. Neither were fatal. I remember sitting there looking at my hands in my lap and repeated asking, "Well what will he die of then?". The doctor, kind and calm but obviously slightly exasperated, kept going back to the Trisomy 18.

"He has Trisomy 18."

You see, most of the stories we had read were of babies who had complications in addition to and because of the Trisomy 18. Serious complications. They were missing organs, their esophagus wasn't connected to their stomach, they had spina bifida, their organs were growing in their umbilical cord... serious stuff. Stuff that, clearly, was fatal. You could easily see that a baby can't live with ___________ (fill in the blank with one of a plethora of problems).

But our baby, although measuring small, didn't have any of these serious complications. So why would he die? WHY??

"He has Trisomy 18. Trisomy 18 is incompatible with life. He will died from having Trisomy 18."

We struggled to wrap our heads around this. If everything worked, why was our baby going to die?
* * * * * * * * * *
Around this time, I also started to get big. And by big, I mean HUGE. According to the ultrasounds, I had 50% more amniotic fluid that was normal. This polyhydramnios (excess amniotic fluid) is common in pregnancies with T18 babies. Although our baby was barely in the 10th percentile, I was measuring 5 weeks ahead of where I should have been. While all the extra room was likely lovely for the baby, it made me very, VERY uncomfortable. At 29 weeks, I was almost as big as I was at full term with Liam. The polyhydramnios also put me at an increased risk for preterm labour and other possible complications, both before and during labour.

It also increased my anxiety. We worried it would affect our chances of seeing our boy alive.
* * * * * * * * * *
It was around this time that we also decided on a name for our unborn son. We chose his names based on their meanings. We chose Nathaniel for his first name, which means "God has given, or gift from God", and we chose the name hebrew name, Achaziah for his middle name, which means "God has taken".

Nathaniel Achaziah.

Job 1:21-22 says,
21He said,
"Naked I came from my mother's womb,
And naked I shall return there
The LORD gave and the LORD has taken away.
Blessed be the name of the LORD."
22Through all this Job did not sin nor did he blame God.
Nathaniel's name was a reference to these verses. Together his name means "God has given and God has taken." Even though we didn't understand the how and whys of our present circumstance, we chose to recognize God's sovereignty in our lives and the life of our son. Our decision to carry Nathaniel to term was based on our belief that it is God only who has the right to decide when our son would die. Nathaniel was a gift from God. He knew how the story would end.

We didn't.

From Mourning to Dancing: Part IV


  1. thank you so much for continuing to share this story. I am sure it is bringing up many emotions for you (that of course are always there). It's been a blessing for me to read your "testimony" of sorts about your beautiful boy.

  2. I came to your blog via WW and got sucked into your story, it's so sad but written with such warmth and feeling. I'm sure Nathaniel's brothers will thank you for explaining this part of their history in the future.

    Thank you for letting me share his story.


  3. This is so touching. As a mother, I can't even imagine. You seemed to have handled the loss of your son with such grace. What a testimony you are!

  4. Oh Amy -- these posts must have been heart-wrenching just to write. I hope they help bring some peace to you, even after all these years.

    I am in awe of your courage, and your grace. These are beautiful, haunting, wrenching posts...

  5. I found you through your You Capture post and, after seeing Nathaniel's sweet picture on your sidebar, read Nathaniel's story. I can't even begin to imagine your pain, but you are telling a beautiful story. Thank you for telling it--I'll come back to see if you've written more. And I simply love Nathaniel's name. Beautiful! May God continue to comfort you and your family.

  6. The last paragraph simply gave me goosebumps. Your hope is so prevalent. I applaud you both for never giving up on your son!


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