I have readers I’ve come to think of as family. Men and women who reach out for all sort of reasons. Some have concerns, others a missed diagnosis, some have lost a child or fear they will. And some are seeking forgiveness.
I will tell you, before you read on: this will make you uncomfortable. You might feel anger. You may want to write and say horrible things. You may feel sorrow, or pain, or maybe you even relate to the situation. Whatever you feel, please remember I am not just writing here- I am also moderating. While I allow attacks against myself, I will not allow them against other people who write or are featured here, nor against my child. What is ahead is hard to read. It is hard to comprehend as a parent. But I’ve never been where this woman has. Adelaide’s diagnosis came weeks after her birth. Weeks after I knew her sweet face, smelled her breath, nursed her and rocked her to sleep for endless hours.
For all of the moments I publish about general life, family, the going-ons of the Martinka family… that is to show you that even though we have a slew of appointments, tests and therapies- they do not rule our lives… I will also never stop educating and pushing to further public awareness of dwarfism. There are fatal forms, there are complications, but there are also beautiful days, moments that make me so full of happiness I feel I may explode, and most of all, times that are simply humbling to a parent.
Please remember that all decisions we make are done with the most care for our children, and made with all of the information we have at the time. I do not judge a parent for doing their best for their child. I only pass judgment on myself, and hope that my readers will as well. Understanding the plight of a parent in distress is something that we can only speculate reaction to. This is raw emotion.
This reader reached out to me from Greece. At 25 weeks, at the advisement of her doctor, OBGYN and multiple pediatricians, she terminated her pregnancy due to an in utero diagnosis of achondroplasia. She asked me to share this letter (sic) for other parents who may think this is their only option.*
A month ago I terminated my pregnancy because my baby was diagnosed with achondroplasia. And now, I regret it every second of my miserable day. The reason I write this letter is to inform women who have all these questions like I had and no time to decide what is the right thing to do. In my case, everything happened so quickly. I don’t really know what happens in your country. Where I am, every doctor and medical expert keep telling me that termination was the right thing to do.
What if it is not? And I think, as a mother that it was not! So keep in mind some things and then decide. You are pregnant to a baby who will be a smart, intelligent human being. Yes it will be small and perhaps will have some health problems that you will have to handle but who can guarantee that this won’t happen to your other absolutely normal babies? You are the mother! You will have the strength and the ability to keep this baby healthy and happy and if you still can’t decide just think of me. I am a miserable person who dies every day. I hate myself just because I was badly informed and weak to decide what I thought it would be the hard road! Believe me… this is the hard road… the road I chose. Just remember that every baby has the right to live. I should have known better…
While this mother is still very hard on herself and feels she should be punished, I left her with this thought, and I leave it with you too, Reader:
* This letter is not written by the blog owner and does not reflect nor represent the thoughts of Chelley Martinka.
Chelley, I must say, this does upset me. It upsets me on many levels. I am very sorry for the writer of this letter, and firmly believe that every woman should make the decision that is best for her and her family. It should be HER and HER FAMILY’s decision, and not the doctors’ or anybody else’s. It makes me so angry to read that she was pressured by her doctors or by anybody else.
However, I terminated for a skeletal dysplasia, and my family and I have no regrets. We believe it was the best decision for us and for our child, whom we did not want to suffer. Incidentally, our doctors were opposed to our decision to terminate, at least until we confirmed with genetic testing, which would take several weeks. So the stereotype of the doctors”pushing” termination is not universal.
I’m not going to go into the details here, but my pregnancy had very serious complications, for my baby and for me. There were serious problems already, in-utero. But I don’t want to use that as any sort of excuse, to say “well, my situation was worse, so my decision was different.” As parents or prospective parents, we all are given a set of facts and we have to make decisions for the future. The most important thing is that we are well-informed and make those decisions in the firm belief that we are doing what we believe is best, even if we decide to terminate.
I read this blog because it heartens me to see Addie doing SO WELL. She is beautiful, and healthy, and has a wonderful future ahead of her. I also support families whose babies with SD did have not fared as well. And as I said, I am very sorry for the woman who wrote the letter above. But it is important to note that there is another side here. I will be forever grateful that I had the option to not follow through with my pregnancy.
I agree with your statements. I was asked to share this mother’s story, and I chose to do so because I think that educating leads to an educated decision. I do not hold the key to the Right Answer Door for anyone but myself and my family (with the help of my sweet hubby). I am so glad to know that many are able to make the decisions they feel are right for them AND have the medical research/help/advisement/support/etc. to support them. When this mother reached out- and still is- she was heartbroken and guilty. She’s hurt, lost, feels mislead, wasn’t made aware of all of her options and pushed to terminate. I cannot imagine a world like this, and I hope that with further information sharing in the future, we can prevent feelings of “not doing the right thing” (whatever that may be) for their family.
martinkadelux recently posted……and this is why. *trigger*
One further note about diagnosis–I would question any doctor’s prenatal diagnosis of achondroplasia without genetic testing. Often, they just can’t know what kind of SD it is, and may err on the side of achondroplasia because it is the most common and the only one with which they have any familiarity. It is highly unlikely to get a diagnosis before 23 or 24 weeks, and anything diagnosed this early could be something more severe. It makes me really angry to see doctors diagnose achondroplasia to families at 16, 18, 20 weeks, only to fill them with hope.
THIS is something we TOTALLY agree on. I am angered by the parents who are so sure it is achon, only to be so hurt and left in the same place of UN-knowing because their doctor didn’t know and they didn’t say “I don’t know”, but made an improper diagnosis.
martinkadelux recently posted……and this is why. *trigger*
How courageous to share these deeply human experiences.
I agree. We’ve been talking all night… I just want to reach out and hold this mama. She’s in such a lost place.
martinkadelux recently posted……and this is why. *trigger*
Chelley, you have my email. Feel free to pass it on if you think it might help to talk to someone who has been there.
So unbelievably sad for the writer. My heart is so heavy for her. All too often I say to Blake “It’s what the doctor said, and she/he is much smarter than I am, so it must be right.” Obviously my statement is incorrect, so many times, and especially here. I’m sad that she went through what she did, but I am glad that she wrote to you and received love from you.
I believe your blog will continue to help educate others – with hopes that this will stop future parents from just listening to what they are being told, and to learn to question and educate themselves and those around them.
Mary Larsen recently posted…The Princess and the Pee
It’s so hard because there is no “right” for some situations- only “right” for the moment, the family. I feel awful about how the world can push people to feel a certain way without the proper time for processing… but then who is to say how much time any of us have? It’s such a hurry up game… this thing of Life.
martinkadelux recently posted……and this is why. *trigger*
My heart breaks for her. I have never been put into that position, and I can’t even imagine. I am hoping she can find some peace.
<3
martinkadelux recently posted……and this is why. *trigger*
I SO understand the heartache she is feeling. I pray she finds peace with her decision. I terminated a pregnancy many, many years ago. I’m not going to lie and say I don’t wonder about the other possible outcomes. I do. But I also know that the decision I made AT THAT TIME was right for me, AT THAT TIME, and I cannot let myself fall into an abyss about what “could have been.” I have raised and am raising three children.
Will she always think of that child? Yes…as do I. But, I pray she will not let it dictate the outcome of the rest of her life, because life can, and will, move forward and she can, and will, flourish. Forgiveness and acceptance….Forgiveness and acceptance…one day at a time. One. Day. At. A. Time.
Thank you, so much, for sharing. I am glad that you found peace and I truly hope she does, as well.
martinkadelux recently posted……and this is why. *trigger*
Please tell her she is loved! I read her words and my heart blends with hers. She must know that her story will be a blessing to moms who may face this. Her sharing this will change lives. Truthfully, I wish I had the right words that could touch her heart and make her smile.
You are such a wonderful support, Carrie <3
martinkadelux recently posted……and this is why. *trigger*