Monday, November 9, 2009

A Little History...Bear With Me

One year ago today, Shane and I were in our rented home in Vancouver awaiting my scheduled c-section at Women and Children's Hospital for November 19th. I was anxious and feeling as if things were about to start going wrong. Four days prior, I had started swelling tremendously in my left leg and foot, so bad that I couldn't get a shoe on. That night, a Thursday, I had taken a taxi to Labour and Delivery to get checked out because I was terrified I was developing pre-eclampsia. Upon being checked over, the doctors had felt that even though my blood pressure was creeping up and that there was trace protein in my urine, that it was "normal" pregnancy swelling and I was sent home. So there we were. Sunday, November 9th and I was restless and anxious that there would be an impending disaster. I couldn't sleep. I remember getting out of bed at three am and pacing and then logging on to an expectant mother site I visited at the time and then climbing into bed about an hour and a half later, still anxious but exhausted. Little did I know that in five hours time, my water would break and my twins would be on their way. But first, a little history....

Shane and I have struggled to have children. When we married in 2003 it was with the intent to start a family immediately. I had been previously married with no children and am eight years older than my husband so at that time, my clock was definitely ticking. Almost immediately after Shane and I married and I went off the Depo shot, I became pregnant. Unfortunately, I had undergone gallbladder surgery not knowing I was pregnant at the time and had been on a plethora of medication from narcotic painkillers, general anesthetic, blood thinners to antispasmodic drugs. About a week after my surgery, I realized I was late and took a pregnancy test which turned out positive, but only faintly positive. A week later, I started bleeding and was devastated to learn I was miscarrying. Figuring the miscarriage was due to the surgery etc. we decided to wait a cycle and try again. In early February as soon as we started trying again, I became pregnant again only to miscarry within weeks of my positive test. Suspecting something was going on, my ob/gyn ordered genetic and immune testing done on both Shane and I. Shane's tests came back fine, however my tests showed I had high levels of antinuclear antibodies, anti cardiolipins and lupus anticoagulent. Not being sure what these test results meant, my doctor figured she would try me on baby aspirin for my next pregnancy and that all would be well. Four months later I was pregnant again only to begin miscarrying within two weeks of my positive test. By this time I was deeply depressed and desperate for answers so I begged my doctor to refer me to the recurrent pregnancy loss clinic at BC Women's Hospital. I waited four months for the appointment to roll around and Shane and I drove down to Vancouver in January hoping to find some answers. It was at this appointment and after reviewing my bloodwork that I was diagnosed with Antiphospholipid Antibody Syndrome, an autoimmune disorder that causes my body to make blood clots in the placenta which eventually kills the fetus. Treatment for this involves twice daily injections of blood thinner while pregnant, daily dose aspirin for the rest of my life and progesterone to support my uterine lining. It was also there at Women's Hospital that I discovered I was pregnant yet again. I was put on heparin immediately and our daughter Lorelei was born at thirty-six weeks by emergency c-section when I suffered a partial placental abruption. I was so relieved to finally have a child, and so emotionally traumatized by all we had gone through, I didn't think I would ever want to try for another child again. I was wrong. When Lorelei was eighteen months old, we decided we wanted to give her a sibling. Again, I got pregnant immediately after having my IUD removed and I had started the blood thinners at ovulation to make sure that if we did conceive, the pregnancy would be protected. I had no idea, no doubt in my mind that anything could go wrong. At eleven weeks, I went in for a routine prenatal appointment confident that everything was okay. I didn't even freak out when my doctor couldn't find the baby's heartbeat because I was sure it was just too early, however she was concerned enough to have me go over to the hospital for an ultrasound. During my ultrasound, it was confirmed that my baby had stopped growing at seven weeks four days. I was heartbroken and since I was showing no signs or symptoms of miscarriage, my doctor arranged a D&C and pathology to find out what had gone wrong. We were told that we could not under any circumstances try to conceive until we knew what had happened. Four months later, the results came back that our baby, a girl, was missing one of her sex chromosomes, a disorder known as Turner Syndrome. Had she lived, she would have been infertile, short statured and may have had some learning disabilities.

After being reassured that it wouldn't happen to us again, Shane and I started trying to conceive again to no avail. It had almost been a year since my last positive pregnancy test when I asked my doctor to prescribe me some Clomid, hoping that my ovaries just needed a jumpstart. I was prescribed the lowest possible dose and got pregnant the first time around. We were excited and scared, hoping beyond hope that everything would work out this time. Within weeks I was measuring big and was struggling to fit into my clothes so my doctor ordered a dating ultrasound to make sure my dates were correct and that I wasn't further along than we had originally thought. I was just over ten weeks pregnant when I went for the scan and I was terrified that I would hear the words that I had heard so many times..."Not viable". As I lay on the table, I was shaking and the tears were starting to form. The ultrasound tech was taking her time and when she finally put the wand down, I asked her, "Is there a heartbeat?" to which she replied "Yes, Would you like to see your baby?" Overjoyed I answered yes and was thrilled to see the little sac with the flashing heartbeat on the screen. Then moving the wand over to the other side of my belly, she said, "And here's the other one...congratulations, you're having twins!" I screamed "What!" so loud, I scared her and then I started crying so hard I couldn't catch my breath. Concerned, she asked me if they were happy tears to which I answered "Yes!". She printed out six pictures for me and still bawling, I stumbled out into the hallway, digging in my purse for my cellphone to call Shane who was at home with Lorelei. When I got out into the parking lot, I was bawling so hard Shane couldn't understand a word I was saying on the phone and finally yelled, "Are you alright?". "There's two babies, we're having twins..." I said. "Awesome!" was his reply. And so it started. Our journey to having two babies.

Our joy was to be short lived however as my doctor felt that because of my age, I needed to have special testing done in Vancouver for birth defects. I was dead set against having an amnio due to the risk of miscarriage so my doctor suggested we go for a nuchal translucency ultrasound. At the nuchal translucency, Twin A's nuchal fold measured 1.8mm and Twin B's 1.9 mm. Given my age and their measurements, the MFM doctor felt I should have an amnio to rule out Down Syndrome and Trisomys 13 and 18. Again we declined but agreed to have my pregnancy followed by Maternal Fetal Medicine in Vancouver which would mean a trip down for my fetal anatomy scan at twenty weeks and then more visits barring complications.

My pregnancy progressed fairly smoothly up to my twenty week scan, although I was incredibly uncomfortable already by the five month mark. I was huge and between heartburn and a sore back, I spent much of the beginning of summer napping and taking it easy. When Shane and I arrived in Vancouver for my fetal anatomy scan, we were nervous and excited. We were dying to find out the gender of our babies because both of us were hoping for at least one boy. I had already suspected I was carrying a boy, having had a quick peek at one of the twins bottoms during an ultrasound at sixteen weeks to check my cervical length. Sure enough, as the tech started the scan we were told that Twin B was a boy and A was a girl. We were overjoyed. As the scan progressed and I lay back watching the screen on the wall, I became concerned when I noticed that the tech was spending a fair bit of time examining the heart of one of the babies. When he left to get a doctor to check something and then suddenly five or six doctors were in the room with us, I knew something was wrong. At that point, I was sure the problem lay in Twin A, our girl. The MFM doctor explained that there was a problem with Twin B's heart and that we would be having a consultation with a pediatric cardiologist following the scan. Instantly I began to cry, suddenly terrified over what could be happening.

The pediatric cardiologist and a nurse met with Shane and I in a small conference room following the ultrasound. We were told our son had a large hole in his heart (ventricular septal defect), only one large artery coming off the valves and it didn't appear that he had a pulmonary artery. We were told it was very serious and that it could be possibly one of two conditions, Tetralogy of Fallot with Pulmonary Atresia or Truncus Arteriosus. We were booked in the following day for a cardiac echo and a consultation with a geneticist. As we called home to tell his parents we would be staying an extra day, I started sobbing, explaining to Shane's mom that there was a problem with our boy's heart. The next day I had an ultrasound with the pediatric cardiologist that lasted approximately two hours. Afterwards, we met with the geneticist and a social worker who explained that our son's defect was very complex and possibly related to a genetic disorder called Q22 deletion or DiGeorge Syndrome. We were told our twins would need to be born in Vancouver and that our son would need ICU care immediately, possibly prostaglandin to keep his patent ductus open and surgery. Depending on his exact diagnosis, he could possibly need a shunt put into his heart immediately upon birth and open heart surgery anywhere from birth to six months afterwards. It was at this point we were offered selective reduction. They explained that they could terminate our boy's life but not without risk to his healthy sister. Instantly our answer was no. We would not under any circumstance risk either of our babies' lives and that we would prepare to do whatever it took to give our son the best chance at life.

Upon returning home, and after receiving the report from Women's Hospital about my pregnancy, my doctor decided that she wanted me to live in Vancouver from twenty four weeks on in case I went into premature labour. She said that if I went into labour in the Okanagan that I couldn't be guaranteed a bed at Children's where my case was already being followed. At that point, Shane and I made the momentous decision to pack up our house and move to Vancouver to await the birth of our twins. Luckily, I found a place called Three Links House which provides housing for out of town families seeking medical treatment at Children's Hospital. We got a three bedroom top floor of a house, fully furnished with cable, utilities and phone included for thirty dollars a day. After writing several letters to the various charitable organizations in town, the Knights of Columbus and the Lions Club agreed to pay our rent for the entire time we were living in Vancouver which allowed us to keep our home here. Thank goodness for the kindness of those organizations. Which brings us to the night of November 9th, 2008 where I restlessly paced, convinced something horrible was about to happen.

Today as I recalled the events of last year and with the anticipation of Calvin and Georgia's birthday tomorrow, I went to the store to buy Calvin some flowers. As the woman walked over and asked if there was something she could help me with, I told her I needed something to bring to the cemetery and that it would have been my son's first birthday tomorrow. I started to cry. Desperately trying not to completely break down, I told her that I wanted a Happy Birthday balloon on a stick that I could put in the ground at his grave. I also wanted some flowers. The wonderful lady helped me pick out some white mums with some baby's breath, a small blue teddy bear and the owner hunted high and low for a balloon and something to put it on so that I could stick it into the ground. He came out with a Happy Birthday plastic plant stick in blue and a blue balloon which he tied to the stick with blue ribbon and then clipped on the little bear. The lady asked me what my son's name was and I told her Calvin. She wrapped up my flowers in green paper and tied multi coloured ribbons around the bouquet making it look cheerful and festive. They only charged me twelve dollars and I thanked them and wept as I paid. As I went to leave, the woman asked me if she could hug me and she came around the counter and took me in her arms and said, "God Bless you sweetie, and your little Calvin too...." It made me feel so good and so sad at the same time. I cried all the way to the cemetery and only stayed long enough to put Calvin's balloon and flowers down and to wish him a Happy Birthday. How I wish he was here as we celebrate Georgia's first birthday tomorrow....


  1. I wish he were here too Margaret. I'm sure this is so terribly bittersweet for you, and I know you have a tendency to feel guilty as I do.
    Go easy on yourself and feel however you need to feel. I know Georgia will be thrilled on her special day as you hold Calvin close in your heart.
    I'm proud of you for writing the beginning of your story. I'm so sorry that you had to lose so many. I understand your history a little better now, and just the fact that you carried the twins after that abruption, gives me more hope than you know.
    It actually makes me wonder if my dr. shouldn't have me on baby aspirin, or do some genetic testing.
    I know getting this out is hard for you, but it does help heal. It helps to release it, so to speak. I know it will inspire others as well.

    You are incredibly strong and beautiful. You're a great friend to me. Thank you

    xoxo Lindsay

  2. I so wish Calvin was here with you, I wish he was here smashing cake and growing big and strong along with his sister.

    Be gentle with yourself, know that he knows how much he is loved and missed. I'm sure Calvin looks down upon you every day, and smiles ear to ear.

    I wish Calvin's heart had been healthy, I wish you had all 3 of your children with you today. You will always have Calvin in your heart though, so you do carry them with you every day.

    Thank you for sharing your story. You are strong and brave, much more then you ever think. You continued to fight on, even through heartache. Your children are lucky to have you as a mom.

    Thinking of Calvin on his first birthday!


  3. Ah, Margaret. What a journey to motherhood you've had, bless your heart. I'm so sorry it's been so rough and you've had these sad outcomes. I'm sorry Calvin isn't with you. I'm so glad you had the Knights and the Lions pay your rent in Vancouver (knowing how expensive Vancouver is no less!). I am thinking of you today and of your Georgia and the rest of your family. Sending you a big (((hug))). I gave you my email in an earlier post on your blog but I don't know if you saw it - - of course I'd love to chat any time. I've felt so isolated since moving and losing our George it would be nice (in a sad way - but you know what I mean) to connect with another bereaved mother.

  4. Thank you for writing this history. I am in tears reading it... was it healing in a way to write it? I would love to sit down one day and tell our story from the beginning... It is just so diffiuclt because there are two stories of heartache, and it overwhelms me to think about how to start and how to tell the story well.
    Thinking of you today! I know how exhausting the emotions of the day can be!

  5. Margaret - I have said it before - you are amazing. You have been through so much and are an amazingly strong mommy because of it. Calvin loves you and wishes he could be here to comfort you.

    I am wishing both, Georgia and Calvin a very Happy Birthday and sending their mommy all the strength and love I can from afar.


  6. Lea is right, you are an amazing woman. I can't believe everything that you have been through. I will be thinking of you, Shane and your beautiful twins tomorrow. xo

  7. I wish he was here too. It sounds like the bouquet you put together was just beautiful. Remembering Calvin and thinking of Georgina as you celebrate this bittersweet day.

    So many prayers and hugs.


  8. Margaret, I am so sorry. I wish your Calvin was here with you too. Thank you for sharing your story with us, missing your baby boy with you.


  9. oh Margaret, i am so sorry. so sorry for all of your losses and heartache. i wish Calvin was here too. thank you so much for sharing your story. i hope it helped to get some of that out. i started writing my story months ago and just can't seem to finish it. i'm afraid of dredging up all that pain that i've been trying to keep at bay. but i know i need to let it out.
    my thoughts are with you.