What changed me forever…
Hello – and let me first preface this post by saying this will not be Health or Fitness related but simply my story to provide insight so you can get to know me (or the “new me”) as recent events have changed me forever…
I started out 2015 as your typical 32 year old mom. Working full time and just trying to keep it all together on the home front. After many months of soul searching and a recent job change my husband and I were finally ready to start trying for baby #2.
We started our journey to try to concieve and as luck would have it we concieved on New Years Day, and on the first try! We were shocked but elated and had a really hard time keeping the news bottled up, so told a few family members and friends. I spent much of the first trimester battling anxiety and panic attacks which unfortunately I’ve been plagued with all my life…but otherwise felt good and baby was seemingly healthy and we were excited that our 2 year old son would soon have a sibling.
My life changed on April 2nd, when I went in for my first trimester screen at 15 weeks pregnant. Happy as a clam I waltzed through the doors thinking I’d be seeing my baby again and hopefully would in the clear to tell the remainder of family and friends the good news. But it was not good news… the doctors found that my baby had a very underdeveloped brain, a lot of water in the brain, and possible holoprosencephaly (which means the brain did not divide into hemispheres when it was formed). Also there were possible issues with the heart, cleft palate, and a single vessel ambilical cord. I was told that all signs were pointing to Trisomy 13, a deadly genetic disorder in which the baby carries 3 copies of chromosome 13. Babies that have full T13 typically do not survive for long, with a 1% chance that they will even be born alive. I was told my baby likely had no chance at life. I was shocked, crushed, angry, and sick. How was it possible that my beautiful baby had all of these things wrong when everything looked and felt so normal to me? After several hours of counseling I left the office in shock and dispair for my child and not a lot of concrete answers. We had to wait a week to do an Amnio (sampling of Amniotic fluid to test for different genetic disorders) and also to take a look at baby’s brain again to see if anything had changed. Prognosis was not good and I went home with little home and was physically ill for two days following from the shock of it all. After a few days I started to feel hopeful and I went to church and prayed…bargained with God…and begged and pleaded for a miracle.
Unfortunately we did not recieve our miracle, only a confirmed diagnosis of Alobar Holoprosencephaly (the worst kind), single vessel ambilical cord, and severe cleft palate/lip, and baby may or may not have had a nose. It was at this point when the doctors strongly suggested I consider terminating this pregnancy as my baby had no chance of survival outside the womb and it was a danger for me healthwise to carry to term. We still did the Amnio that day and got results back three days later that the diagnosis was in fact full Trisomy 13. We also found out that day that we were having a baby girl :(
Heartbreaking does not even begin to describe how we felt that day (and still feel) and sadly we made the very difficult choice to terminate the pregnancy. At the time I was 17 weeks, well into my 2nd trimester, and could not bear to continue on with the pregnancy knowing that she could suffer if born alive and would not have a chance at life. Some babies with T13 can live for a while (I’ve even read about cases where it’s a few years) but with all of the brain abnormalities our daughter would have likely not been one of those cases, and so we chose to let her go peacefully and without suffering on April 16th.
We gave her a name, Emma Grace (Emma means “whole” or “complete” which I know she will be in heaven) and Grace is one of my grandmothers name. I wrote a letter to her prior to letting her go and we had her remains creamated, and at the moment she is resting in our bedroom with us. Never in a million years did I think I’d be terminating my pregnancy and creamating my child in 2015. Never did we see this coming. There is no right or wrong thing to do in these situations but we just chose what we felt was best for us. If someone had asked me what I would have done if I was ever faced with this situation I would not have known. You can never know until you are there in it. I have many mixed emotions about the decision we were faced with, but also feel very at peace with it…that it was right for us and our daughter. No judgement to anyone who would choose otherwise.
Fast forward to today… it’s been a very long road and I am still recovering. It’s going to take a long time to feel like myself again but I am trying. I spent the last few months eating and drinking my feelings, and lost myself a little in the grief. But I’m slowly climbing my way out of it. My husband is doing the same.
I am finally telling my story today because I finally feel strong enough to share it. I think it’s important to “come out” so to speak and share this because I’m sure there are other women out there who have been faced with something similiar and want others to know they are not alone. There is a terrible stigma against women who have had to terminate pregnancies for medical reasons and it’s so sad that we cannot publicly grieve for our children due to fear of judgement by the public.
I also want to share my story because I want anyone who reads my blog to know who I am and where I am coming from. I love my children (plural) and also am trying to learn to love myself again. I know one of the ways back to that is letting fitness back into my life. I am hoping this blog will help others to do the same and also be a great forum for dealing with the many challeges (both personally and professionally) women face. After all, we mommies need to stick together!
Please feel free to comment but be kind in your words and know that I am still healing from this horrific experience :(