Monday, July 27, 2009

From Mourning to Dancing - part 1

I first read about Stellan many months ago. I forget now how I stumbled onto My Charming Kids, but I was quickly taken in by MckMama's cute kids, her stunning photography and her faith, especially in the midst of what was happening to her baby. And again this week, the blogosphere, twitter and Facebook are being flooded with requests for prayer for Stellan.

This little boy and his little heart have been through so much. He's eight months old, only a little older than Andrew. I'm constantly checking Jennifer's Twitter feed for updates, hoping for good news and at the same time fearing that I might be following this sweet babe's final days.

Yesterday morning, I found myself thinking of Stellan almost constantly. And almost every thought of this little boy (who really I don't know at all) leads to thoughts of a little boy I do know. The little boy that I lost.

I can't help but whisper, "Heaven doesn't need any more babies."

Ever since I added the pictures of all my boys to the side bar, I've been thinking of sharing the story of my second-born. It's still hard when I'm asked, "How many kids to you have?". To say four then requires an awkward explanation, which in turn leads to even more awkwardness on the part of the questioner. But the easier response, "Three", makes me feel like I'm denying him.

I've sort of felt the same way here on my blog. I've shared his video, but not the whole story. I don't want to feel like I'm denying him here. I'm proud that he is my son! Poor boy doesn't get much play on the ol' blog though, so it's time to rectify the situation.

At the risk of people thinking that I'm somehow trying to capitalize on Stellan's story (which I'm TOTALLY NOT. I've been crying over little Stellan and praying for strength and peace for his parents -peace that passes understanding, peace that defies understanding, peace that-is-in-no-way-related-to-understanding because you just can't understand a situation like this), but the truth is that thinking of one little boy naturally leads my thoughts to another little boy. One who I've been really wanting to share with you... my son Nathaniel.

Part 1 - The Diagnosis, June 2005

After six months of trying, Peter and I found out in early March that we were expecting our second baby Nov 9th, 2005. Despite all the morning sickness (it's quite clear to me that it was a man WHO HAD NEVER BEEN PREGNANT came up with the term "morning" sickness ), we were thrilled by the prospect of a baby brother or sister for Liam.

I had my first ultrasound Monday, June 13th, in the evening just before going into work for the night. Although she began my appointment chipper and almost annoyingly cheerful, her tone changed dramatically by the end of the scan. She had spent what seemed to me an exceptionally long time examining one particular area, taking measurements and writing notes. Even though she'd turned the screen away from me, I could crane my neck around just enough to see what it was she was looking at.

On the screen was my unborn baby's little head. Even though I am not an ultrasound technician, I could tell that something wasn't quite right. I couldn't remember what Liam's head looked by ultrasound during my pregnancy with him, but this baby's brain seemed to be divided into four unequally circles, black in the middle with a small rim of white.

After finishing her measurements, the technician left the room saying that she needed to consul with one of the clinic's doctors. When she returned she told me several times to call my doctor as soon as possible to discuss the results, but wouldn't explain what she'd seen or if there might be a problem. Even though the U/S technician didn't say anything decisive, she certainly didn't leave us believing that everything was fine. Everything was clearly not fine.

Was there a problem with our baby?

We left the office and I headed to work. I tried to stay calm, but was completely unable to push back the mounting fear. Without anyone there to check me, my mind raced through every possibility, each worse than the rest. By the time I got to work, I was sick to my stomach and fighting back tears.

Even though Peter tried his best to reassure me that everything would be fine, it was an awfully long night. Awful.

The next morning I called my doctor as soon as the office opened only to be told the results wouldn't be in UNTIL FRIDAY. We already knew that something was likely wrong or at least abnormal with our ultrasound, and now I was being told we would have to wait FOUR MORE DAYS before we would find out the results. I called back later in tears, blubbering and sobbing to the poor receptionist, and told her I couldn't wait that long. I just couldn't. I needed to know what was going on. The reception was very sweet and told me she'd see what she could do. Bless her, she called back about an hour later with a twelve o'clock appointment for me. It was nice to know we'd soon have some answers, but then I started to worry even more. They wouldn't have made the extra effort and gone to the trouble to rush things if there wasn't something wrong, would they? It seemed even more likely now that something really was wrong.

A problem with our baby.

I picked Peter up from work and we went to the appointment together. When we finally met with our doctor, he told us that there were several anomalies consistent with Down Syndrome: choroid plexus cysts (cysts on the glands in the brain that normally produce the fluid surrounding the brain), shortened femurs, and a very thick nuchal neck fold (over 9mm instead of under 5mm). I'd declined all the prenatal blood screening, not thinking it necessary as we had no risk factors or markers for, well, anything. Young, healthy, didn't drink, smoke or do drugs, no medical history of any complications or issues, diseases or illnesses. Our doctor explained that these markers on their own would not be cause for concern, but together the painted a rather different picture.

I sat there on that crinkly paper covered exam table, hardly able to take it in what the doctor was telling us. Never did I imagine I'd be sitting in a doctors' office hearing news like that. The part of me that was even able to register how I was feeling knew without a doubt that if I started crying, I wouldn't be able to stop. Peter was sitting next to me and I could see him nodding his head to indicate to the doctor that he understood, but I couldn't make myself turn and look him in the eyes. I was able to keep my voice mostly steady while we asked a few questions, and the doctor recommended an amniocentesis as the next step if we wanted a concrete diagnosis, which we accepted. There was no way I could endure the remainder of the pregnancy without knowing. The amnio was scheduled for the following week, June 21st.

It was an awful week to endure. There was absolutely no way we could look at the situation in a good light. It seemed like all our dreams for our family and this baby were gone. We read about Down Syndrome, researching and visiting DS parenting forums. But even reading all the accounts of how DS kids bless and brightened their families' lives did nothing to comfort us. For us, this news was nothing short of tragic. We were heartbroken. The option of terminating the pregnancy was discussed (it had to be put out there), but was immediately dismissed. We could never live with ourselves. We even talked about putting the baby up for adoption, but really only because we felt we had to discuss all of the options. We knew that adoption wouldn't be an option for us either. The mere thought of it made us feel sick and selfish and cowardly.

This was our baby.

It was tempting to try to distance myself from the baby. To try to tell myself that it would be better to end the pregnancy early rather than have a child who would be so terribly limited in what he or she could do. I pictured Liam running around with a group of boys playing soccer. Running behind them, trying desperately to keep up was another little boy whose face I couldn't quite see. I couldn't see his face, but I could easily imagine a life of being left out and left behind and pushed aside. It was not the life I wanted for my child.

This was not the baby I'd been dreaming of.

June 21st we arrived at the Southern Alberta Maternal - Fetal Medicine Clinic (just the name sounded scary!) just before 9:30am. We were expecting to just have the amnio done, which I'd been told would take about 15 minutes. First though, we met with a nurse who documented my prenatal history. Then they did another complete ultrasound ( a Level II U/S) of the baby from head to toe. The technician was great and took loads of pictures of the baby, a baby who, to us, looked completely normal and healthy and lovely. When she was through, she went out and talked to the perinatologist who then came and wanted to look at some things for himself. He spent extra time on the heart and, strangely, the baby's hands.

When he was through, we sat down together to discuss his findings. Right away he started explaining that all of the characteristics were consistent with Trisomy 18. We stopped him and asked if the baby had Down Syndrome (Trisomy 21). He answered with a definitive no. We were so relieved! I remember smiling and thinking, "It's not Down Syndrome!" He then proceeded to explain Trisomy 18...

(Both Trisomy 21 (Down Syndrome) and Trisomy 18 (Edwards Syndrome) occur when a baby has three chromosomes in either the 21st or 18th position. The risk of having a child with Downs, for my age group, was only 1:1300 live births. Trisomy 18 is the second most common trisomy after Downs. It occurs in about 1:5000 live births, though it's estimated that the frequency among miscarried babies is one hundred times these numbers. Do I sound like a dictionary? I've often felt like one.)

After our meeting with the perinatologist, it was discovered that we were not, in fact, scheduled for an amniocentesis like we'd thought. Thankfully, the doctor was able to fit us in and performed one that afternoon. The amnio was much more painful than I thought it would be (ie. it was excruciating. The doctor figured he hit a nerve on the way in. Nice. I will NEVER forget the feeling as that needle pierced my uterus.) We were told that the full report could take between two and three weeks, but they'd be able to give us preliminary results by that Friday (using a FISH (Fluorescence In Situ Hybridization) test that uses some sort of probe or light to count only chromosomes 13, 18, and 21 which are the most common trisomies).

Without even seeing the results, however, the perinatologist had little doubt that our baby did have Trisomy 18. As he looked through his notes, he began to describe the findings. The biggest red flag for him was the fact that our baby would not open his hands throughout the scan. They remained clenched the entire time. He then went on to paraphrase the other markers he'd seen on the ultrasound:
- small, spread out eyes
- large skull
- very small lower jar
- small, low-set eyes
- short legs and arms
- etc, etc, etc.

Really, he made our baby sound like a malformed little monster. He made us question whether or not we even wanted to see him. How hard would it be to see an obviously sick baby? Are those the images we wanted to carry with us?

As we sat in his small office considering the mountain of abnormalities it seemed our baby already had, the doctor mentioned that he could call the hospital that day and schedule us for an induction. An abortion.

I remember thinking, "WHOA. Hold on a minute! The results aren't even back! We've just heard about this Trisomy 18 for the first time and you're already asking us if we want to end it all??" Even though we'd pondered that same option only the week prior, having someone else suggest it put me immediately on the defense.

This is my baby!

We politely yet firmly declined his offer and explained that we needed time. We also let him know that we were definitely leaning towards carrying the baby to term, in spite of the diagnosis.

After the amnio, we took a break for lunch (and found A $60 PARKING TICKET on our car window since we thought we were only there for a 15 minute proceedure and then completely lost track of time, what with finding out our baby was seriously ill and all. Nothing like getting kicked when you're down, eh) and then met with one of the genetic counselors. Her name was Jennifer and she was kind and informative and great at answering all of our questions and discussing all the possible outcomes and options whether the test came back positive or negative for Trisomy 18. Even with a negative result, the baby would still face a myriad of problems.

Here is a copy of the results from the level II ultrasound:
Multiple fetal anomalies are noted:
Brachycephaly is present with a "strawberry" shaped skull.
The CSP are not identified during the exam. (I think that's a part of the brain that they normally measure the nuchal fold from. The doctor said it just wasn't there.)
The nuchal fold appears mildly thickened, consistent with her prior exam.
The nose is small and the nasal bone is hypo plastic.
There is micrognathia. (which I figured out means a small jaw)
The orbits appear small and are widely spaced, suspicious for hypertelorism.
There is flow across the interventricular septum suspicious for a VSD. The cardiac outflows appear normal (this means there's a hole in the heart)
Both hands remain clenched with the second fingers overlapping the third and the fifth overlapping the fourth. The thumbs remain inwardly fixed with the fingers.
Fetal choroid plexus cysts are noted.
The observed femur length is less than 90% of the expected.
The fetal humerus length is less than 90% of expected.
Both kidney are echogenic though normal in size (this means they showed up white on the U/S when normally only really dense things like bone show up white)
Both heels are prominent.
I didn't understand half of what the report contained, and it was probably just as well at that point. What we did understand (or could figure out with the help of Google) was that even without the chromosomal abnormality, our baby still had a hole in its heart, kidneys that didn't work properly, cysts in its brain, and bits of its brain that were missing.

Thankfully we didn't have to wait two to three weeks for the final results -which would have been shere torture!- as the geneticist called the following day. My heart pounded as I answered the phone and heard Jennifer's voice on the other end. Apparently, one of the lab technicians had insomnia and decided to go into the lab and work all night, meaning our results came back in less than 24 hours (that's what you'd call small mercies). The results were positive for Trisomy 18.

Our baby had Trisomy 18.

What I haven't explained up til now is that, unlike Down Syndrome, Trisomy 18 is fatal. The term we heard several times during our day at the clinic was "not compatible with life." Not. Compatible. With. Life. Most babies die before birth, rarely surviving pregnancy. Those who do make it to birth typically only live a few minutes, hours, or a few days. Less than 10% (of those who even survive pregnancy) live to celebrate their first birthday.

Truth be told, we were pretty numb to the news. We were so cried out from the week prior. We'd spent all our tears and anger and sadness and frustration on something that we didn't think could possible get any worse (than Down Syndrome) only to find out that it could get worse and it did. That night, Peter and I both seemed to feel nothing. Just empty and numb. It took several days to digest and really understand what it all meant.

Not compatible with life.

Our baby was going to die.

Here is part of the email we sent out to our family and friend, sharing with them this devastating news,
It's pointless to think of how unfair this is. How our family (my family) has already been through so much. How we've already had to bury Heather's baby. Part of me would like to end it all right now and not prolong this pain. To get on with our lives and our family. But then I think that going through another twenty weeks of this pregnancy -even with all the pain and heartache and grief and uncertainty- will be worth it if we're able to spend even a few minutes with this baby. After all, he's still our baby.

We love him.

Oh yeah, it's a boy. The little brother we always dreamed of for Liam. The one who was supposed to be a best friend and playmate for Liam, like Peter was for Tim.

We'd so appreciate your prayers for us over the next few weeks and months.

We're having a hard time praying ourselves.

Amy (for Peter and Liam)

Part II


  1. Brenda (@ottawamom)July 28, 2009 at 5:07 PM

    I, like you, have been praying for baby Stellan and have been praying that God would spare another baby from heaven. The loss of any child hurts (I know from experience) but I can't imagine how hard your ordeal must have been. I thank you for being brave enough to share your story and will read the rest of the story with admiration.

  2. Oh Amy, I can barely see the screen to type this through tears. You are right, heaven doesn't need any more babies, there are far too many up there already.

    Thank you for sharing Nathaniel's story and for showing us that you can go on after such heartache. You are an inspiration to me.

  3. I'm crying right now, reading your post.

    It hurts to lose a little one, and I agree that I don't think heaven needs any more babies.

    Thank you for sharing your story. I couldn't help but think of my own child in heaven as I read it. I think, as mothers, as people, we will always relate another's story to a similar (or even vastly dissimilar) story of our own. I am glad that you are sharing the story of your second born.

    I have the same problem when people ask how many kids I have.

    Man, my post is all over the place. Anyway, thanks for sharing, and I love the pictures of all your boys!

  4. I cannot even imagine the heartache you went through (and still do I am sure). I, as well, thought about my own child while I read this and how I would have felt. You are an inspiration to all of us mothers out there.

    A friend of mine has a son with Trisomy 13. I tell her every day the same thing I just said to you.

    Thank you for sharing your story.

  5. Oh, Amy. I'm so, so sorry.

    Your Nathaniel looks beautiful in his picture. But you're right, heaven doesn't need any more babies.

  6. Thanks for sharing your story,'s sad but you can hear the love in your voice, too. One of my best friends had the exact same experience -- Trisomy 18 -- with her first baby and we all still think of her little girl and remember her on her birthday.

    Looking forward to hearing the rest of your memories, too.

  7. Oh Amy, so sorry to read your story of Nathaniel. I too have been praying for Stellan as well as other babies that were sadly lost last year. Thank you for sharing your story so others out there going through this know that they are not alone.

  8. Amy,
    You are so brave. Thanks for sharing.

    Blessings to you,

  9. I don't know what to say. I just wanted you to know I read the post and I am thinking of you.

  10. Amy, I'm so sad. I'm so heartbroken for you, I'm at a loss for words. I can only imagine the pain you had to go through, the agony, the sadness. What you had to go through is so unfair, I think. I always question my faith when I read about other moms who have very sick children or moms who have lost a child... I'll never understand it. These perfect little babies... such sadness. And my heart breaks each time I read a story like yours. Your baby boy, your second son, he'll always be a part of your family. His picture on your blog should be there. He was beautiful, you know. I can't imagine your pain of holding him, and losing him later. I'm so, so sorry, and I'm sorry my words are not even enough to express my grief for you.

    Stellan has also been weighing heavily on my mind. I started reading Jennifer's blog months ago, before Stellan was hospitalized with SVT a few months ago. Her blog was great, her photography amazing, etc. I fell in love with darling children, and reading about Stellan also broke my heart... I hope to GOD for the best for them, for Stellan to survive this. I can't take any more sadness, I just can't... it's just every day, there seems to be another story out there about an innocent child getting sick... and it's heartbreaking. I'm so easily attached, even if I may not know a person... breaks my heart. I pray for your baby boy, and I know one day you'll all be reunited again. And I pray for Stellan to get better, and I pray for all the children out there. Sorry for rambling. Thanks for sharing your story... xo

  11. As you probably know, I am somewhat new to your blog so I didn't know you lost your son. I'm finding it difficult to express my feelings so I apologize in advance. I mostly wanted you to know that I read your story...and that I am truly sorry that you experienced such loss...horrible loss. From what I read so far, I really admire the difficult decisions you had to make. I hope that you will share more of your story, more of your son's story with us.

  12. Oh, heart breaks for you.

    I am so, so sorry.

    Thank you for being so brave and sharing the deepest parts of your heart.

    You are such a beautiful mama. An inspiration.

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  14. Amy, every time I hear/read Nathaniel's story I cry...I cry because of the heartbreak, I cry because of the pain, the strength, the sorrow and how you all somehow managed to pull strength from somewhere deep and continue on. You're an inspiration to all (all of you!) and I admire your strength and devotion to God during which time it was no doubt tested. What a tremendous spirit Nathaniel has placed in you hearts and which you can place in our hearts through sharing his story.

    I couldn't agree ARE a beautiful Mama!
    Much love and hugs to you guys...miss you!
    Penny xoxo
    PS. I deleted my initial post because I had spelled Nathaniel's name incorrectly..sorry!

  15. Amy, your strength is an inspiration. Your story is such an important one to tell. Thank you for sharing it with us. Hugs.

  16. Heartbreaking, truly. But thank you for sharing Nathaniel's story with us.

  17. Amy, I can't imagine that pain. Thank you for sharing. I'm looking forward to hearing the second half of this story ( Dancing).

    Andrew DeGolyer

  18. I'm glad to see you posted his story, I never would have asked because the tattoo speaks volumes. I'm sorry you had such heartbreak.

  19. Wow, I can't even imagine your pain. You are very brave for sharing your story!

  20. Amy -- oh Amy, what a sad, sweet story. Thank you for being brave enough to share this story -- it must be so difficult to do.

    And you know what? That's one more thing we have (sort of) in common. In 2006, I lost a baby at 17 weeks, and though it was never confirmed explicitly to me, I was lead to believe that the baby likely had Trisomy 18. I'll never forget those words, "incompatible with life." I can't hear or think them without flashing back to that ultrasound clinic, the day we found out about the miscarriage.

    I'm so so so sorry for your loss...

  21. I've been waiting for this weekend to end since it started. From missed balloons in Gatineau to cold coffee at Tim Horton's, stupid little things have snowballed into the even stupider idea that this was "the worst weekend I've had in, like, forever". But then I read this and remembered that both my babies are sound asleep, warm and cozy tucked in their beds upstairs, and realized I have nothing to complain about. Nothing. Thanks for giving me a better tomorrow. :)



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