Thursday, June 26, 2014

Never Alone

I was lucky in a way. I was expecting a call about the results of my amniocentesis. I had a two day window. I was also lucky to have my husband and my mom present. When the caller id on my cell showed the Dr. they were standing beside me. I was able to be cry in the arms of people I loved and trusted. I was able to gather a support system on line as well. A group of women from all over the country were awaiting the news with me in spirit so to speak. But even with all this support, there was a lot lacking in how I was presented Jude's diagnosis and what followed after the diagnosis.

When the Dr. told me that my fetus has Trisomy 21, there was a long pause. In the midst of a very emotional time, I was being asked to lead the way. What I wanted, and needed was direction. Finally I spoke up "We're going to keep the baby. Do I keep seeing you?" There was a relieved sigh after I spoke, and he said "I'll connect you to the receptionist to make an appointment." He was clearly happy to pass this time bomb onto someone else. I want to be clear that my fetal medicine Dr. was an amazing Dr. His care was top notch and he was supportive of my decision to keep Jude, and I suspect would have been supportive if I had chosen to terminate. But he clearly wasn't prepared to talk to me about what Jude's diagnosis meant or what steps I should be engaged in upon hearing the diagnosis.

Things with medical professionals just got worst. At the time, I was utterly unaware of what to expect. I didn't know what to ask for in terms of medical care. I was also emotionally fragile, feeling like at any moment I was going to shatter. I loved Jude fiercely but was scared of her future. I was scared of all the things I didn't know about Down syndrome. And frankly I was scared because I was pretty immersed in some ableist thought. What I needed was some information, and I had assumed my medical providers would be providing that information for me.

But that is not what happened. Instead, when I called the midwives office to confirm my appointment, and to ensure that they had gotten my test results, the nurse burst out with "I am so so so sorry." Midwife after midwife asked me tentatively if I knew my fetus had Ds. I finally had to request that the Dr. tell all the midwives that I was aware, I was keeping the baby, and we were thrilled to be welcoming her into our family. I found myself educating nurses, midwives, ultrasound technicians, and doctors at a time when I was still pretty vulnerable. Towards the end of my pregnancy when I requested a non stress test as I wasn't feeling Jude move as much and I knew we had a higher risk for miscarriage/still born, the ultrasound technician told me I was living  her "worst nightmare" from when she was pregnant.

Because I am who I am, I did my own research. I sought out online support and I learned about what Ds meant today. I looked at pictures. I read stories about adults with Ds. I reached to the online groups and I read a copious amount of blogs. I was lucky to be directed to Down syndrome Pregnancy almost immediately. But the point is that my husband and I did this on our own. We were very much alone, left to navigate a whole new world with no supports and no maps. Our core beliefs frankly were a primary factor in how we approached Down syndrome (a strong belief in the value of all humans and in human rights for example).

But now that I a a bit removed from the initial diagnosis, now that I know a bit more about what should have happened, I am a bit horrified. I don't think that anyone on my medical team did anything awful intentionally. I received excellent health care when pregnant with Jude including monthly ultrasounds, and the NCIU staff on the ready during Jude's birth. My concerns were always taken seriously and I don't think anyone skimped on care just because my baby had Down syndrome. But I never saw a genetic counselor and it was never suggested to me. I didn't know that was normal procedure until after Jude was born. I was never given any information about what life with Ds would be like for Jude and for our family. I most certainly was not given any information about our options.

This is why I support the Lettercase's Never Alone campaign. While I proudly remain prochoice I understand that this position also means proinformation. Lettecase has managed to cross a rather large divide in the Down syndrome community by creating a book that recognizes all the options available to women with a prenatal diagnosis of Down syndrome but that also offers important information. As a feminist, I think it is vital that women are empowered to make informed and independent decisions about their health care. When we are denied information though, or not given any information, the power to make the right choice for us taken from us.

When I look at my own story, I realize how incredibly lucky I was to be able to get the information I needed. Not all women are in this position. Some do not have access to computers or the knowledge to know where to look to find support. Other women do not have partners who support them and empower them to make their own decisions about their bodies. There are women in our community who do not speak English and are thus shut off from many avenues of information. There are women who are isolated by poverty and lack of decent health care. It is important that we as a community support these women not just the women who seek us out.

I encourage everyone who reads this post to please go read the link to the Never Alone Campaign. Share your story in the provided box and sign up to make sure that no woman has to make decisions in isolation.

1 comment:

MacKenzie said...

It is always shocking to me the words people think are alright to say to others!