Abortion: Your voices, Pro and ConSep 28, 2013
I asked parents of boys with DMD to speak candidly about whether or not you would have an abortion at ten months if you knew that your child would have DMD.
I thank those of you who shared their views on abortion with me, so that I could share them with you. I have chosen to let you speak for yourselves, in your own eloquent voices. Some people wrote as many as two, single-spaced pages about their thoughts and feelings. Obviously, I could only excerpt from those letters, although everything they expressed was valuable.
As two women who wrote to me made clear, my effort to solicit your opinions was about as unscientific and random a survey as one could imagine. My intention was not to change minds, or to keep score, but to create a forum where we might all listen to and appreciate one another’s points of view.
HERE ARE YOUR ANSWERS
“How can that even be a legitimate question? Anyone asking that question doesn’t deserve the kids they have. Strong, I know, but true.”
“This is such an important topic for carriers of Duchenne. In my case I have no religious or legal objections to abortion. However, no, I would never undergo an abortion. I love children and would dearly like to have had more than just my two. That said, when my carrier status was confirmed, my husband had a vasectomy within a few months. In fact, I wouldn’t make love with him until he was declared sterile because I was so afraid that I would be put in the untenable position of contemplating an abortion which I knew I would not go through with and yet that I would regret no matter what decision I made. Does this answer your question? As you can see, it’s complicated.
“I loved Bob with all my heart; he was the light of my life, albeit sometimes a pain in the butt! I believe it’s a woman’s right to choose abortion. I’m not sure if I would have the nerve to go through with that though.”
“I have family members who would flip over the thought of abortion. I don’t know what I’d do. They told me that I am not a carrier. My daughter is a carrier. She is 21. I don’t know what her plans are in the future, but I do know it would not be my place to judge others in their choice. I do know that that I can’t imagine my life without Callam. It is hard but he is one of my greatest treasures.”
“I am a mother of two young boys with DMD (aged 3 and 4 years old). They have a little sister who is 4 months old. If she would have been another boy with DMD we would have had an abortion. Duchenne is not a disease that I will choose for my children to have. That fact does not change at all how I feel about the boys I already have. I am also not sure we would financially be able to care for three boys with Duchenne.”
“If it was my first child, and all I had to go on was the information available on the disease, then the answer would be ‘yes.’ If it was my second child with DMD, again the answer would be ‘yes.’ Not because of ignorance about the disease, or the joy that comes with it, but because I would be worried that I was spreading myself too thin, trying to care for two boys at the same time. On a practical level I would worry that my physical strength would be stretched beyond capacity, and that ultimately, the entire family unit would fail. But if I fell pregnant after I had lost my first to DMD, the answer would be ‘no’ because I would draw on what I know now. That life with DMD can be a good life, albeit a different life.”
“The answer is ‘yes.’ I feel that it is my responsibility to eradicate this disease. There are ways to become pregnant to avoid having a child with Duchenne. My daughter is a carrier. She can have in vitro. It is not caring for a child with Duchenne that scares me. It is what they go through. I would never put myself in this situation to begin with.”
“Such a sad thing to even have this discussion. As if our boys’ lives aren’t worth the time they are given on this earth. Who are we to decide. K has such JOY!!! Our sons make this world a better place. Every one of our sons teaches me about compassion and perseverance. My son’s DMD has made me a better person, and virtually all of my friends would say he has inspired them in some way. I hate this disease, but I would never choose to not have K instead. K is offended when people assume he is suffering. He replies that he just uses wheels for legs and otherwise he’s like the rest of us.”
“Seeing my 22 year-old son in so much pain from his broken femur, his frequently aching back, and now the discomfort of constipation caused by his pain killers makes me pretty sure that, given a chance to prevent another son of mine from enduring the pain and disappointment that my son has, I would. So ‘yes,’ I would choose prenatal testing and would abort if DMD was found to be present.”
“I think my situation is a little different. We adopted our son with Duchenne. We did not know he had Duchenne at the time he was born, nor did his biological family. I do not believe abortion is the answer, but I do feel that giving birth is not the only way to have a family. I know. I chose adoption, and yet Duchenne still found its way into our life. If I were a carrier, I would still choose to adopt. I would not take the chance of knowingly, possibly having a child with Duchenne. I do not judge those who do but I myself, would not choose to get pregnant. If I did get
pregnant, I would NOT abort my child. I most likely would get the screening, only to be/feel prepared mentally.”
“I have two boys with DMD who were both diagnosed at the same time when they were three and an infant. I am not a religious person and I love my boys to death, but I wouldn’t have a DMD baby if I knew it in utero.”
“Absolutely not. I couldn’t imagine my life without J. What joy he has brought to my life.”
“Under zero circumstances would we have aborted knowing what we now know. D is 12 years old and I couldn’t imagine my life without him.”
“Robert was diagnosed at three months of age and the devastation was terrible. After a few months, as soon as we were able to think clearly, we decided to have another child. Our daughter was born 21 months after our son. I had a CVS during week eleven of the pregnancy and was prepared to terminate the pregnancy if the fetus would have our son’s mutation. We are both scientists and pro-choice so the decision was easy. We would never knowingly bring another child with Duchenne into this world. Making a conscious decision to bury another child is not part of who we are. Our daughter is a great sister. We are so fortunate to have her with us on this journey, but so sad to know that she’ll have to watch her brother decline and die. We are so scared to think of how her life will be affected by this. Some days I wonder if we had the right to bring her into all this.”
“Absolutely not. I was in the position to make this decision twice, the first time in 2003 when I was pregnant with my daughter. Doctors were pressuring me to abort and I was not interested. The second time was in 2011 when I became pregnant with my son. When the docs found out I was carrying a boy, the pressure was on. I could not even think of aborting my son, due to my love for J. To me it was almost like – how could I do this when my son has brought me so much joy and changed my life for the better.”
“I became pregnant with the youngest son in 2009, when my older son was nine years old. My older son has DMD and autism, and we were frightened when we found out that we were having a boy. I am not a DMD carrier, to my knowledge. I ended up declining the prenatal genetic testing because I knew there was no way I could have an abortion even if were received a DMD diagnosis from the testing. That child is now 3 and ½ and has not shown any symptoms of DMD.”
“My oldest son was diagnosed at four years old with DMD. Since then I have had a daughter and two years ago, another son. While I was pregnant the doctors asked if I wanted to do the testing so that I could decide if we wanted to keep going with the pregnancy. I declined because it didn’t matter to us if he had the same diagnosis; we would love him the same. I wholeheartedly believe that we were meant to have him. I can’t even imagine going through with aborting him. He is the absolutely the sweetest little boy and he brings so much to our lives. I know it’s going to be a tough road for all of us, especially having two boys with DMD, but I wouldn’t change a thing except find a cure for my boys. We are truly blessed and will cherish whatever time we have with our boys.”
“While I would not have an abortion, I am not sure I would get pregnant again. I watch the struggles that my ten year-old son Jake goes through and it will only get worse from here. This may sound odd, but I think it would be selfish of me to have a child knowing that I could pass on the DMD gene. That’s just me . . . .”