The decision was made, no matter what we would continue on with the pregnancy, we will let our child decide her future, not us. A lot of the laws around termination had just changed, in the weeks leading up to the decision I spent a lot of time talking to a friend who had been put in a similar situation, her 1st child had an only one chamber heart, her child would never take her first breathe, the decision her family made was to 'terminate', this meant she would be induced and would hold her baby, name her and kiss her goodbye. (My friend has been blessed with two healthy beautiful children since, not a day goes by that I don't think of her heartbreak and how our stories could be so similar)
We had numerous conversations with our doctor, I wanted to know if this would be the case for us, if our child was 'not viable for life' and I decided I could not carry that weight on my shoulders, would I be allowed to birth her, would she be a person, would I be able to hold her, kiss her and tell her how sorry I am? His answer: plain and simple no. Our decision was set in stone.
Even though we were continuing no matter what, we did agree to a CVS, we wanted to be prepared, perhaps we were looking for any kind of positive news. There was no option to reverse our decision to keep our child if the result came back bad, the CVS was performed at 12 weeks gestation, the results take over 3 weeks to return and the 'cut off date' for termination given to us was 16 weeks, we made a blind decision to trust our baby.
A CVS can pick up numerous chromosomal problems, but not all that were associated with a Cystic Hygroma. The process is something I never want to got through again, the held down my baby so she couldn't move and knock the instrument that was scraping at her placenta, I was physically and emotionally bruised after it.
Positive news came, the CVS results came back perfect, they also came back with the news we were carrying a girl. Good old Doctor 'bad news' was quick to remind us that the results only knocked few possibilities out of contention and that now she is clear of Trisomy 12, 18 and 21, the possibility that she has a major physical deformity has jumped to 'almost certain'. Meaning there is something wrong with her brain or heart that most likely makes her not viable for life. We agreed to routine structural scans, they wanted to focus mainly on the heart. They told us not to get our hopes up, that the Hygroma is not showing any signs of shrinking, in fact it was growing with her, when in most cases Hygroma's shrink as the baby grows.
On the way home from the positive news I felt like we should be celebrating a win, but all we were doing is hearing the doctors telling us that something is not right and that our daughter still only has a 1 in 100,000 chance of being born healthy. The odds they gave didn't change when the CVS came back, it added stress, it added even more what-ifs. A song came on the radio, we listened, we cried. My husband and I looked at each other, I cannot believe I've uttered these words, we said "I would like this song at her funeral". It was a dark time, we couldn't focus on the positive, how could we, everyone was telling us not to, everyone was preparing us for loss. I cry remember planning the 'if' she didn't make it, why couldn't we just focus on that IF it did happen and enjoy having her grow as a part of me, as a part of our family. I cannot listen to that song any more, its an instant trigger, my husband on the other hand loves it, he says it reminds him that we beat the odds and we have a daughter, I wish I had his positive spirit, it only reminds me of the pain and how I feel like I was robbed of enjoying my beautiful pregnancy.
We now know our child is a precious baby girl, we name her right away. She is our child, with a name, she is a person, she is Harper Maree...
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