"Conditions Not Compatible With Life"

When facing the prospect of having a child with significant medical challenges and more so one who will likely die, physicians inform patients that their child may have "conditions not compatible with life." This is the go-to phrase of medical community. Any parent who's been in our position can relate.

I distinctly recall when I first heard this term. It was unsettling, but I didn't break down in tears (that was for after the appointment). It was during my 20th week that we realized the baby's heart was not normal (at the time her heart was smaller than a dime, but advances in fetal cardiology have enabled doctors to see the valves, chambers, etc). I was devastated, but hopeful.

As time elapsed I became aware of more and more abnormalities with the pregnancy. Both Ellie and I were affected. I was also receiving information from an array of doctors--none of which I clearly understood. So, I ordered the obstetrics book used in medical schools and read it over and over again until I was fluent and understood the science, methodologies, possible diagnoses, and treatments. I searched and read as many articles as I could find on PubMed (the research database of medical literature). Nothing I could find was positive or offered a glimmer of hope, but I took charge of our medical care and made decisions that I felt were in our best interest. I had hope.

Under all this pressure I refused genetic testing. I wanted to know if something was wrong, but in reality nothing would change. What was the utility of knowing? It wouldn't change anything. I could find out that she only had a heart defect or I could find out that she had a "condition not compatible with life." Relief or distress. These were my options.

In retrospect, I regret nothing. In fact, I'm glad I didn't have an amnio. Had I discovered Ellie I was not healthy, I would have been devastated. My physician team really wanted me to have an amnio so they could be prepared for delivery and we could determine if we should "save my uterus." "Conditions not compatible with life" often mean that the mother undergoes a emergent c-section because the child is unlikely to survive (I will never be able to deliver a child naturally again). From a medical standpoint, why put the mother through a surgery if the child is likely to die anyhow?

Although the past few months have been heart-wrenching, full of peaks and valleys...I would have never changed a thing--our decision to have a child, carrying Ellie, refusing genetic testing, irreversibly harming my uterus, going without sleep for months, quitting my job...nothing. Looking at her on a daily basis, watching her grow, how could I have made any other choice?

Hey Hot Stuff!!! Nice DNA.

Immediately after Ellie was born, Greg and I thought about the many ways we could keep Ellie with us even after she passed. We have taken 1000s of photos (both professional and our own), have keepsake boxes (one for each of the girls and myself), saved some of her outfits and blankets among other things.

To add to this Greg thought we should have a DNA portrait made for her (it's a completed by a method called gel electrophoresis for you nerdy folks out there--it's commonly used in crime dramas to identify criminals). A Canadian company, DNA 11, offers this service. And so I ordered the kit.

All I needed to do was collect some of Ellie's DNA from her cheeks (the swab was WAY too big for her, but I cut it down to size and was able to get enough cells for the portrait). And viola. I dropped it into the mail and three months later her canvas arrived.

We love it. We chose bright colors that emulate sunlight. Throughout the pregnancy and still I sing to her "You are my sunshine." It was only after she arrived I realized how true and painful this children's song is for me, particularly the second verse:

"You are my sunshine

my only sunshine

you make me happy

when skies are grey

you'll never know dear

how much I love you

please don't take my sunshine away."

"The other night dear

while I lay sleeping

I dreamed I held you in my arms

when I awoke dear

I was mistaken

so I hung my head and cried."

GO ELLIE!!!!

A few nights ago while Greg and I were chatting Ellie suddenly lifted her head. I was so excited that I leapt out of my chair and began cheering/screaming. Greg joined in. Every time she picked up her head we cheered (very loudly). She was definitely intrigued and engaged by our game. How 'super awesome' (a Charlotte quote) is this??

In the past few months I've prioritized my hopes...I hope to see her smile...I hope to hear her giggle...I hope to receive a kiss on the cheek. To be honest, I never thought she'd begin meeting developmental milestones like picking up her head. Maybe, just maybe, I'll be able to make her laugh. This would be so profound and meaningful for me---for all of us.

Despite everything, at least I still have hope. Go Ellie!!!

Roadtrip!

After driving nine hours we arrived at a beautiful house in the outskirts of Boone, North Carolina. We spent a week with extended family. This was exciting for us because we weren't sure that extended family would have an opportunity to meet Ellie.

During our week, we celebrated many events, including my grandparents 80th birthday. We also celebrated my one year anniversary with Ellie. (In the words of one family dinner...Joyal, what were you doing a year ago, huh?? Nice.)

Anyhow. Ellie got lots of snuggles and had a great time. To be honest, I would have been hesitant to take her to the mountains had I considered the attitude difference. Ellie has several heart issues that could have put her a grave risk for heart failure. She has one large hole in the lower two chambers of her heart, several small holes in the top two chambers, and one valve that doesn't fully open and and close. There's some speculation that the large hole and the 'sticky' valve may be offsetting each other. No one can say for sure.

Nonetheless, she proved me wrong (shocking). She tolerated the attitude just fine.

Although driving with three children, a golden retriever, and a husband was super stressful, it was well worth it.

"She's Hardy"

In late August we had an appointment with a nationally renowned geneticist, Dr. Kenneth Rosenbaum, from Children's National Medical Center in Washington, DC. We were eager to see him since he has decades of experience treating children with rare conditions. Most of our doctors Eleanora is the first or second child they've seen with her particular condition--Dr. Rosenbaum has seen more than 400).

Our visit was the most positive we've had since the 20th week of pregnancy. Many of the children Dr. Rosenbaum have seen have been blind and/or deaf (Eleanora is neither), many are not able to use their hands (Eleanora is dexterous), many never respond to stimulation (Eleanora has many opinions and shares them freely), and of course many do not continue to live. From his recollection, Dr. Rosenbaum has had five children live longer lives than expected--three lived until 2-4 years old, two children lived until their teenage years.

Although Eleanora has clear advantages over many of her peers, her prognosis continues to remain the same--on hospice care. But! This appointment shifted our frame of mind--from waiting for her death to living in the moment. It gave us hope. This is something we haven't had for months.

I heart Dr. Rosenbaum!

PS--Mike V. this post is for you!