Wednesday, February 24, 2010

Holding onto Hope

How to start a blog? I have no idea, I've never done this before. I thought about it during my first pregnancy - it seems like a nice way to write down all those thoughts and remember them. Particularly for me, living so far away from my family. I thought it would be nice for them to be able to read my updates and maybe the distance wouldn't seem so far. But I never wanted to do it enough to actually sit down and start.

I had a pretty uneventful pregnancy with my firstborn. I had no morning sickness, no complications, a fairly easy delivery. She was a healthy happy baby. Ate well, slept well. Walked and talked on the early side. A complete joy to us. It took us a while to conceive - but other than that, it was all very easy.

After she was born, my only fears were that it would take a long time to conceive again. We wanted to have three kids and have them close together so I was ecstatic when we found out we were expecting again when she was only nine months old. Unfortunately, we lost the baby at about 5 weeks.

After my miscarriage, it wasn't too long before we were expecting again, due in July '10. In this pregnancy, it seemed much like my first - no morning sickness, I felt good. Everything seemed set to go the same way until we had the Nuchal Fold test at 13 weeks of pregnancy. A normal result is meant to be under 2.5mm but our baby had a result of 5mm - well outside of normal. We were given a risk of 1 in 7 for Downs Syndrome. 

I spent a few days googling various things about Downs. I knew that there was an 85% chance that it wasn't even Downs so I knew that the odds were still in our favour. From what I could find, Downs didn't scare me. Most Downs babies are sleepy, happy, have minimal health problems and have a life expectancy of 50 or so. Of course I wanted my baby to be normal, but I could live with Downs. 

At 17 weeks, we went for another scan and the doctor said "I'm sorry but this seems to be a problem with the skeleton. I need to refer you to a doctor who specialises in prenatal diagnostics. This is outside of my area of expertise." He got us an appointment within 3 hours - I'd never had a doctor make appointments on my behalf before. I went into the waiting room full of pregnant ladies and had a cry - knowing that my odds of having a normal baby were decreasing. 

At the appointment with the specialist, she confirmed what our original doctor suspected. "Skeletal Dysplasia". An abnormality of the skeleton. At the moment it seems to be only affecting the limbs of the baby but the main danger is that as the baby grows, the abnormalities will affect the brain or the lungs and cause the baby to be unable to live. A google search tells me that 25% of babies diagnosed with this condition are stillborn. Another 30% don't make it to 6 weeks. Out of the other 45% though, the news may be "better" than Downs - the most common cause is achondroplasia which results in the baby being dwarfed, but life expectancy is normal and maybe more encouragingly, the baby's brain is not affected so the baby can live a normal life. The doctor said that there is "very little chance" of the baby being normal. We may not find out the exact type of Skeletal Dysplasia until the baby is born though.

I am encouraged by the fact that I know that God has a plan not only for my life, but also for this little one's life. And my prayer is that regardless of the outcome, that He will be glorified and that He will give my husband and I the strength and grace to go through whatever is placed in front of us. I know that God is able to do a miracle, I know that if He wants, He can heal our bub so that she's born completely normal. I also know that sometimes, He has a greater plan and that His plan is above our plan - and who am I to tell God what to do? 

I am holding onto hope though. Hope that my baby girl will be happy. Hope that she will be able to live a long and fulfilling life. Hope that I won't have to lose her before I even have a chance to meet her. But most of all, hope that her life will make a difference somehow...


  1. Thank you for starting a blog Nik. It'll be a great way to keep up, and you, Bernard, and Lana are in my prayers. Love you guys.

  2. Thank you for starting this blog... I will continue to pray as I read your journey and I will hope along with you!


  3. Hope is a very powerful you guys, I'm here if ever needed xxx

  4. Hi Nicole,

    I found your blog through "In This Storm".

    I have read through your posts and my heart goes out to you.

    I wanted to tell you that your baby girl's life has already made a difference! Through you sharing your story, you are raising awareness and that is amazing. You are brave and strong... I know it may not feel that way at this time but you are putting your life out there for others to learn from and that is courageous.

    Please know that you and your babe are in my thoughts.

    Smile through your tears,

  5. you are such a brave woman.. good luck to you.