Posted in Public Attitudes, Misconceptions, and Advocacy

Babies’ Births and Blindness

2016-08-09-19-23-17Well, in the event that you really enjoy reading this blog and have missed posts, I have a really good reason for not posting in a while. WE have been busy with a newborn and in the thick of adjusting to the “new normal” of life with three children, one of whom also started Kindergarten this year–a whole other blog post.  Three months later, I’m finally feeling like I’m starting to come up for air and mastering our “new normal” routine.

We welcomed our third child, Brayden Alexander Hartle on Tuesday, August 9. He weighed in at 9.93 lbs. and was somewhere between 20-23 inches long , beating out his two older sibs by a few ounces–yes, we make really big, but long and skinny babies.  He is quite the little cutie and we’re so happy to have him join our family.

I ended up having a scheduled C-section with him. This was my third C-section. Our first child was brow presenting, instead of crowning, so after about 20 hours of being induced and in labor, her delivery resulted in a C-section. . When our second child came along, he was breech at one point and estimated to be somewhere between nine and ten pounds, so we ruled out a potential “trial of labor after cesarean” due to possible risk for complications because of his size. By the time this little one came around, I pretty much didn’t have any choice but to have another C-section. IN any case, I guess it really doesn’t matter how they get here, just that they do and that they are healthy. We’ve been so blessed each time.

One advantage to knowing when you’re going to deliver is that it allows you to plan a bit better. Since Jesse and I can’t drive, this gives us a little bit of relief to know that the possibility for making a 2 a.m. Uber ride to the hospital is low. I’m sure our friends who are on the emergency call list appreciate it too.

We have delivered all three children at the University Of Maryland Medical Center, in the exact same O.R. even (wish I’d thought to get a picture of myself standing outside the room prior to this last delivery for sentimental purposes. Each experience has been positive. Given that the focus of this blog is on blind parenting issues, I thought I’d take a few minutes to share some related thoughts with respect to our deliveries and our blindness because there is always a little bit of apprehension in the back of our minds about what our experience will be like. Blindness always comes into play in some form or fashion.

Prior to our first child’s birth in 2011, we were pretty nervous about what our experience would be. We’d heard some negative things from blind friends. At that time, there was also a custody case going on in Missouri where a baby had been removed from the custody of her two blind parents shortly after being born, purely on the fact that a hospital social worker expressed some concern about the parents’ abilities. (Just as an added note, at that time here in the state of Maryland, it was also legal for children to be removed from a parents’ custody purely on the basis that the parent was blind with no need for evidence of harm or risk to the child( Since 2011, state legislation has been enacted that prevents this . I wrote a testimonial for a state congressional hearing which you can read here.) Delivering a baby is scary enough without bringing all these other fears into the mix.   So, we tried to be proactive. We spent a bit of time working with our doctor and even spoke to the head nurse of the Labor and delivery unit prior to our daughter’s birth to help dispel some misconceptions and hopefully make our experience a positive one. I am grateful to report that each have been. I think our own ability to advocate for ourselves, our skills training, and demonstration of our abilities have been the prevailing factors in making this so. I also need to give credit to the advocacy of our doctor. We’ve been so blessed to have a great doctor who has followed all three pregnancies and who has become like a part of our family. If you’ll indulge me for a moment, I’d just like to say that finding this doctor has been like an answer to prayers. Bringing a child into the world is such a scary, challenging, exciting, emotional, intimate experience and I’m so grateful that we’ve been able to work with her. She originally started out as just my regular physician about ten years ago, but because she is a family medicine doctor, she’s now become Jesse’s doctor and our pediatrician. She’s also been able to follow all my pregnancies, was present for each birth to support me—even rearranging her schedule just for us–, and she would have delivered each child had I not had C-sections. So we really feel like she knows our family and is our #1 supporter.

Each delivery, we’ve ended up staying in the hospital for an average of about four days (the protocol for a C-section is two or three, but we have stayed longer because our children all had Jaundice . Typically, medical professionals’ views or training when it comes to blindness are more focused on how to correct the problem rather than looking forward to how one would live successfully with it, so this allows us a lot of opportunities to help educate others on the capabilities of blind people. I’ll admit, each time we’ve felt a little bit like we were under a magnifying glass. Despite this, it’s still been a great opportunity for us and felt a bit like a public education mission in that we can demonstrate the capabilities of blind individuals. We’ve been asked a lot of questions about how we do certain things; i.e., how do you get around, how do you change a diaper, how do you keep track of your children, how will you deal with car seats, etc. We’ve been able to share some of our methods and talk about the kind of training available to those with vision loss that helps us with everyday life. We get told that we’re “amazing” or “inspiring” most of the time, which is nice to hear, but truthfully, we just want to help raise public expectations on the abilities of blind people to live normal lives, including having and raising a family.

We did have a bit of an issue this last time with one of our nurses which I want to share. I felt a bit uncomfortable with her because of the way she doubted my abilities by questioning some of my actions. For example, she didn’t want me to pick up the baby from the bassinet because she was afraid I would drop him. Instead, she wanted me to page her to get him. At first, her concern seemed slightly relevant, but I assured her that my husband (who was asleep in the chair next to me) was staying with me and could help with this. She continued to seem uncomfortable with this and I finally realized from her questions that she was concerned about the safety of the baby with both of us being blind, and our ability to locate the baby and the bassinet. I began to feel a bit irritated partly because it was late and I was physically uncomfortable, but mainly because I felt like I had to defend myself to her. I finally had to explain to her that I had enough vision to locate the bassinet and agree to call her if I needed help. I felt annoyed that it took me reassuring her that I had enough vision to see the baby in the bassinet because it felt like throwing my very capable, but practically totally blind husband under the bus. Let me assure you that it’s not too difficult to feel where a large object placed next to your bed is, nor is it hard to locate a crying baby. And if you’re worried about misjudging the placement of the baby back into the bassinet without vision, I can testify that natural instincts will kick in and you won’t release the baby until both of your supporting hands feel a flat surface under the baby…at least in my experience.

We had one or two other little misunderstandings from her and asked our doctor if there was a way to request that she not be assigned as our nurse again. . We’re generally pretty easy going and not confrontational, but she made both Jesse and I feel uncomfortable. Anyway, the story has a happy ending. Towards the end of her shift, she started talking to us and asking us some questions and seemed to begin to change her perception. In fact, the next night she came into our room and told us that she was not assigned to us that evening but wanted to say hi. (We honestly don’t know if this was coincidence or arranged), and she told us that she really appreciated the opportunity to meet us and admired us for what we were doing. It just goes to show you that actions speak louder than words, and that people’s perceptions can be changed.

So, there you have it…a brief glimpse into our birth experiences. We are so grateful for the privilege of being parents. It is honestly the most challenging, sleep-depriving, stressful experience ever, but the most joyous and worth every moment. Thanks for reading.

 

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Posted in Public Attitudes and Advocacy, Uncategorized

3D Printing Ultrasounds..Wow!

As most of you know, we are expecting our third child in August.  Becoming a mother is one of the most exciting and wonderful experiences.  Each pregnancy is a little bit different and special for me.  Even though we’ve “done this” now a couple of times, each milestone of the pregnancy is still exciting and new–confirming that you are pregnant, hearing the heartbeat for the first time, and getting that first ultrasound.  Even though we don’t really get get much out of the ultrasounds since we can’t see the screen, they are still exciting events.  I wish I’d have had the chance to have an ultrasound like this one somewhere along the way.  This is an incredible use of science and technology  in such a meaningful way.  Everyone should go support Huggies for making this possible too. 🙂