On December 16th, 2005, my husband and I were forced to make an extremely difficult decision and have an induction at 20 weeks gestation. To make a very long, very complicated story short- our daughter suffered from an extreme case of Trisomy 18. This is a chromosome issue, and in our little girl's case, this anomaly made itself known by anencephaly. This is when the brain never forms. Our daughter's spine never closed at her shouldblades during the first 20 days of gestation, thus never producing a brain stem, thus never producing a brain. Here's some info, if you're interested: http://www.anencephaly.net/anencephaly.html
You know - maybe I'll just cut-and-paste our story onto my blog ... sometimes it's just a bit too hard to go through the whole thing again.
But the reason that I'm putting up this post, is because I never forget her. A day does not go by where I don't think of her, and wonder what my life would be like with her here. There are days where it is so overwhelming, even 2 years later. I talk about her often. She's our middle child. One of three. Sometimes I wonder if I'll ever have a daughter or if she was my only chance. I wonder, I wonder, I wonder.
I came across a photo today, that I intend on scrapbooking. It's the most exquisite flower from a Christmas Cactus. My dear friend C gave the plant to me on the year anniversary of our loss - December 17th - and it was to bloom at Christmas time and remind us of our little Shalom Hope. But as God would have it, this year it flowered in May - right on Shalom's due date.
Oh how I miss you, little one.
In December 03 I got pregnant with our first child. I was ignorant to a lot of the medical mumbo jumbo and I simply did whatever the doctor suggested for me to do. So, at 18 weeks I took the "Triple Marker Test". It tests a few things; spinal cord issues (openings in the spine, such as Spinal Bifida) and Downs Syndrome. My levels were slightly abnormal and on a Friday afternoon I received a phonecall from a doctor who said, and I quote, "We think you're carrying a mongoloid." Needless-to-say, I placed a complaint against that doctor - and we opted for no extra testing. On August 11, 2004 we had our son, Mattias Antonio. He was not a Downs baby, and was premature at 36.5 weeks, weighing 6lbs4oz. Big enough for me *wink*.
A year, exactly to the day, I got pregnant again. This time, I was far from obsessed with being pregnant. I'm sure it had a lot to do with Mattias taking up my time and life just kept trucking along. We decided to skip the Triple Marker test and I scheduled our ultrasound appointment at 20 weeks pregnant.
It was Monday at 11:15 am that we went in to have our little one checked. And I will never, ever, ever forget that moment. After hearing the heartbeat, I thought everything was fine - but then our technician left and came back with a doctor and my husband. My heart is racing even as I type this.
The doctor started off - and my head started spinning - I was getting the jyst that something was terribly wrong with our child and that our lives were going to be forever changed. In those 20 seconds or so, I imagined what life would be like with a severely handicapped child - and then the doctor said the words that I will never forget, "Your child's condition is not compatible with life. It will not survive outside of your womb - you need to consider termination."
Our child was diagnosed with anencephaly. Between specific early days after conception, the spine (which is flat) rolls up into a tube starting at the bottom. Our child's spine stopped closing in between their shoulder blades - thus failing to produce a brainstem - thus failing to create a brain. Obviously, without a brain, the child could not survive. Nothing was there to tell the heart to beat, the lungs to breathe ... nothing. However, at first look, it appeared that everything else was normal (fingers, toes, organs etc...). The ironic thing, is that the Triple Marker test would've shown this problem much earlier than 20 weeks.
We made an emergency appointment with our own doctor for that afternoon. There, we asked what our options were. We asked if we could have the baby and donate it's organs. No - because it's unethical in Canada to have a child for it's organs, even if it will not survive. We asked if there was any possibility of reversal - and we were told that the body goes through a checklist when developing ... if it skips a step it does not go back to correct itself. But how could I terminate a child we wanted to badly?? How would our families react? How would our friends? What about our church family that we loved - would they judge us or hold us during this painful time??
This was our baby - and I needed a miracle.
That night we had a close group of family and friends come over. We are a couple who believes in God and have a strong faith ... but we weren't sure what we should do. After a night of worship, crying and prayer, my sister-in-law, Bonnie prayed that it would be obvious to us as to what we should do.
The next day we begged for another ultrasound - just to be sure, and just to give God a chance for a miracle. So the appointment was made for Wednesday and we went to the Women's Hospital.
We did some research and found out that 80% of all anencephalic babies are girls ... we were pretty sure we were having a daughter. That was confirmed at our ultrasound - and nothing had changed with her diagnosis. After the ultrasound we met with a genetic specialist that wanted to talk to us about some serious concerns.
Obviously, the main one was the our daughter was not going to survive - but furthermore they were positive that spinal fluid was leaking into my bloodstream and asked me to terminate immediately - or my life was in serious danger. It was strange the they said that, because I had recently been complaining about being confused, and things not making sense to me. I had thought it was just hormones. Since it was the week before Christmas, I asked if I could wait until afterwards - and they said "no - we would seriously discourage that".
So we believed that was the confirmation that we needed to terminate. My stomach sinks as I type that ...
We needed to have an autopsy in order to know if Mattias was our exception or whether this little girl was our exception - so full labour and delivery were our only option. We were told that we should not conceive until after our test results.
On the Thursday, we were struggling as to what to name this little one. Should we name her as we would have should she have survived? Then, as plain as day, a name came to me: Shalom. It means "peace". We needed to come up with a 2nd name, we felt, as should she have taken 1 breath, she would need both a birth & death certificate. We felt it only right to have 2 names ... but we just didn't know what.
On Friday, December 16 (my mother's birthday) - one week after the Christmas production I had sang in at our church, and 5 days after we found out - we went to the Women's Hospital and I was induced ... During the labour, Lu (my husband) was reading a book that said "may you find Peace & Hope this Christmas". There was her 2nd name "Shalom Hope" - peace for today and Hope for tomorrow.
After 12 hours a labour, on December 17, I delivered our little girl - weighing half a pound. She was born stillborn. We inspected her and it was clear that we made the right decision. I can honestly say, had my life not been in danger, I don't know what I would've done. But I do know that I would've honestly gone insane delivering a full-term baby with the injuries Shalom had. But to us she was our baby, everything from her neck down appeared perfect to us though her face was as a mask.
I don't know if many of you know what it's like to go to the hospital and come home without a baby ... to sit on the couch and act like nothing's happened. It is a horrible, devastating thing. Grief came in waves, where one moment I was strong and logical - the next I was unable to stand and wailed in mourning.
We chose to bury Shalom. We thought this would be a way to have a place for Mattias and our future children to go. We had only immediate family in attendance. The funeral home provided everything - from the grave site and marker to the chairs and tent ... they treated her as if she had lived a full life. It was beautiful.
My brother, Darren, wrote a song called "Your Love Still Remains" inspired by our experience and sang it for the first time there. It's on the recent CD that our church just put out called "Hope Is Waking". My brother-in-law, Joele, also wrote and sang a song called "Bringing You Home". They are the 2 most beautiful songs I've ever heard.
On March 17, good ol' St. Patricks day, we met at the Women's Hospital to find out if we would be able to have more children. We were told that Shalom was a Trisomy 18 baby, where the 18th pair of chromosomes were compromised. It was a fluke - and very very very unlikely to ever happen again. But I was to go on large amounts of folic acid, which helps aid in spinal cord issues.
On April 4, I got pregnant with Josiah William - our wonderful bundle of joy. He was born January 1 at 12:16am and was the New Years Baby for that city. It came with prizes and newspaper covers. What a great experience. He has his own story, and is far from a replacement of Shalom. He is him, and she is what she was. It amazes me that we wouldn't have him had Shalom survived - so bittersweet.
Shalom taught me so much about compassion. She touched so many lives, and every email/letter that we got I turned into 2 full scrapbooks. Email upon email of love and support came. It taught me that I was loved and that there were an army of those who cared surrounding us.
I also went to counseling right after we lost Shalom - and I learned that I was a mother, a daughter, a wife, a sister, a friend, a teacher, a musician - and that my identity was not in our loss.
It is my hope that I will be able to share my story with others who have lost children; maybe not in the way that I lost mine for every situation is different. But I want to share what I've learned, to hold women who are grieving and to let them know that you can survive from such grief. To know that God is still God and that strength comes through wisdom.
One final thing ... we had thought that Shalom simply meant peace - but it meant so much more than that. It also means "nothing broken, nothing missing" - which was so very appropriate, for we believe that she is complete in Heaven. And our doctor, who happens to be Jewish, said to me as I was leaving an appointment, "You couldn't have named her better. "Shalom" means 'hello' and 'goodbye'." My eyes well up even as I say that now ...
So that is our story.