If you have read my family’s story at leragrace.com, you would know that we got the most devastating news about our little girl when I was 18 weeks pregnant. We were told she had a rare from of dwarfism that would not sustain life outside of the womb, and that it was likely Thanatophoric dysplasia, which is characterized by small long bones (arms and legs) and a disproportionately small ribcage, too small to sustain life. Throughout this journey we were asked multiple times if we wanted to terminate the pregnancy or induce early.
I live in Alberta, and legally, one can terminate a pregnancy at any time before 22 weeks. Anything after 22 weeks is illegal, unless there was something genetically wrong, then a late-term abortion could be conducted, usually by inducing labor early, rather than a D&C. This rule is specific to Alberta, it could be similar in your Province, but generally, it is completely legal in Canada to terminate a pregnancy at any time.
We were first given this option at 12/13 weeks after my trans-nuchal ultrasound when we discovered our little one had more trans-nuchal fluid than normal. This test can give an early warning sign that something is wrong with a baby, and based on the measurement of the trans-nuchal fluid. With the information provided by the test, doctors can give statistics on the chance of your child having a birth/genetic defect or chronological disorder. This test has a 5% false positive rate. Simply explained, this means that 5% of ALL pregnancies test positive. This can help doctors reliably tell 95% of families that there baby looks healthy; and focus further testing on that much smaller 5%. (‘passing’ a trans-nuchal does not clear your baby of genetic problems, it just probably does).
Out of the 5% that ‘fail’ the trans-nuchal, a large percentage (>80% or so, from our research) still go on to have perfectly healthy babies.
We had hope that we fell in that 80+%. We also started to accept that, even if our child was not exactly as we first envisioned, it would still be OK; just different. Never had we ever suspected that our baby would not survive.
At the 18 week mark is where we got the worst news possible, and found out that something was definitely wrong with our little girl. At this time we were, again, offered the choice to terminate the pregnancy, I was actually told that they “didn’t want to do an unnecessary caesarian” (whatever that means). We declined again, partially because we didn’t know exactly what was wrong with her, and we still clung to hope that God could and would heal. During the next few weeks, of more testing and watching as her condition only worsened, I was asked 3 more times if we wanted to terminate the pregnancy.
We prayed, a lot, and decided to choose life. The truth was that no matter what the future held for our daughter, certain things were true already; we loved her unconditionally, and we held a trump card, in God, knowing that He could intervene.
It was not an easy choice to make. I felt completely robbed of the pregnancy experience I always looked forward to having, as well as so hurt that I couldn’t keep the baby I could now feel growing inside me, falling more in love with every kick and punch. I was also so utterly, and completely afraid. I was afraid of her dying during childbirth, I was afraid of being able to hear her struggle to breathe after she was born, or listen to her slowly die. I was afraid that if I had an emergency cesarian, I would have to be knocked out, and I would miss her life completely. I truly had never been more frightened in my life.
My husband is truly the most amazing man, though this time, he listened to my fears, and calmed me down, he would pray with and for me every night, and hold me as I cried. He wrote update after update informing people about me and Lera, as well as waking up with me when I woke with nightmares. Near the end of my pregnancy he barely got any sleep, as I didn’t sleep. He helped me get comfortable, put my shoes and socks on/off, and helped me pick things up when I dropped them. All without complaining. He is my hero, and the best gift God has ever given me.
We still prayed for a miracle, but began to prepare just in case one was not going to come. We decided, that by choosing life, we wanted Lera’s life to be the best life we could give her. We did a 3D ultrasound with our families, and got a first glimpse at our beautiful girl and got maternity photos taken. We decided that, no matter what, this was my first pregnancy and Lera will always be our first born. We wanted to celebrate her like we would any other child. At the end of the day what remained true is that she was ours, and we loved her so, SO much. Joy started to trump fear.
Choosing life was so much more than not terminating, it was a change in the way we saw the entire pregnancy.
The best day of my life was December 6, 2014, the day I met my daughter. I’ve discovered through my journey that the best days in life don’t necessarily have to be the perfect ones, where nothing goes wrong, and everything is coming up roses. The best days are the ones where we learn, grow and experience the full extent of what life is, and life is SO much more than what we can enjoy. We had the most precious moments with our beautiful little girl. It was roughly 10 minutes we had with our baby, giving her kisses, stroking her cheeks, and telling her repeatedly how loved she was. We lived 100% focused on her and showered her with all of our love until she passed, peacefully, without pain, in my husbands arms. We were able to accomplish the only thing that really mattered to us through out my pregnancy. We were able to hold her close, and give her a life filled with as much love as we could pour out on her.
I do not regret a moment of what I went through. Each ounce of pain or joy I felt leading up to the moments I had with my baby girl were 100% worth it. She was worth it. For her, I would do it all over again. Neither my husband or I regret anything and are completely at peace with our decisions and actions during my pregnancy, and wouldn’t trade the time we had with our baby girl for the world. Choosing life was the best decision we could have made for our family.
Lera taught us so much. She taught me to be brave, and that I’m much stronger than I give myself credit for. She has shown me a glimpse of just how powerful and how deep God’s love is. I chose life for her, but in reality it breathed more life in me.
What I’d really like to leave you with is that if you are in a similar situation to what I had been though, that you have options. We were so completely cared for through every stage of my pregnancy, and hospice is given as an option. Living in Canada gave us access to some of the best medical care in the country, all covered by Alberta Health Care. Everyone treated us with compassion and empathy and gave us support as we fought through this storm, for that I thank you! If you know me or my story and have been apart of the above or a supportive role of any kind, I truly cannot thank you enough.
If you are struggling know there is always hope.
“I have set the Lord always before me. Because he is at my right hand, I will not be shaken” Psalm 16:8