Who knew?

by Kathy on January 11, 2008 · 4 comments

in CHD, FET #1, Molly, Sean

It is amazing the things you learn about at times like this.

As Bob and I have started to digest our situation, our baby’s diagnosis and what that may mean for us, our baby, Sean and our entire family, I have been struck by the amount of information that is out there, not specifically about our child’s specific kind of congenital heart disease, but rather about other children and families that have gone through some type of similar experience in which their unborn baby was diagnosed with a serious illness or physical or mental defect.

Specifically, one woman, Carole, who found my blog recently and was kind enough to reach out to me, has helped me to begin to understand what we might be in for and more importantly has shown me, by her awesome example, how to live through a seemingly doomed pregnancy, meet your dying child when it is born, gracefully make the most of whatever time you might have with your child and then go on with your life honoring your child’s memory and trying to find some good from the whole experience. She shared her private blog with me, that chronicles the time from when they learned their son’s diagnosis in utero, the rest of her pregnancy, the birth soon followed by the death of her son and how she has been able to go forward with her life and cherish her living children.

When I first read Carole’s blog about her son, I was drawn to a photo slide show that I quickly realized was the pictorial story of her son’s birth and death surrounded by Carole, her husband, their children, her parents, their doctors, nurses and a clergy member. As I watched it, I began to bawl and for the first time grasped, from the perspective of someone who might actually experience something like this someday, what it might be to lose a child that I carried inside of me for nine months or however long our baby survives. Anyway, soon after seeing the slide show about Carole’s son, I found out that there is actually an organization called “Now I Lay Me Down to Sleep” (http://www.nowilaymedowntosleep.org/) that helps to match local professional photographers with families who are expecting a baby that has a serious illness or congenital defect and may not live long after it is born. Their service is offered to these families at no charge and the pictures that they take and then give weeks later to the bereaved are incredible.

Who knew?

As many of you know, to say that I like to take, save, display and share pictures of my family and friends, especially our son Sean, is an understatement. So to discover that something like this exists, though it took me (and Bob) some time to warm up to the concept, is a real blessing. To know that if and when our baby might pass on, that we could have such special pictures to look at and remember our child, I find very comforting.

I had started to tell Bob about the concept of bereavement/rememberance photography, though at the time I didn’t know that was the official terms for it, last night and suggested he might want to watch the slide show with me some time. So you can imagine it was pretty ironic this evening, when Bob called me in from the kitchen, where I was fixing myself a little snack, to see a story on our local news channel, about of all things, you guessed it, bereavement photography. It focused on four Chicago area families, three of whom lost babies soon after their birth, or as infants, and one whose child is still living after a heart transplant when he was two (two years ago) who have benefited from having local professional photographers who offered this service to them at very difficult times in their lives. The families didn’t have enough wonderful things to say about the two photographers that were profiled and how much the pictures they took of their children mean to them. Here is a link to the story, if you want to check it out: http://www.myfoxchicago.com/myfox/pages/Home/Detail?contentId=5463404&version=2&locale=EN-US&layoutCode=VSTY&pageId=1.1.1

Anyway, if nothing else, I think Bob and I are convinced that if our baby lives long enough, and it were to be possible, that we would like to have a professional bereavement photographer help us to chronicle the birth and death of our child, to help us cherish his or her memory as a part of our family in the years to come.

I know this was a kind of morbid post, but right now these kind of details help me to prepare for what might come with this pregnancy and our baby. I find comfort in knowing that this option exists and wanted to share it with you. I also want to thank my new friend Carole for her inspiration and for being willing to share your story and experience with me. I am so sorry for what you have been through, but also find so much hope in knowing that you made it through and have been able to find good in your experience of having your son, even though only for a short time in this world.

Off to bed now. I wish you all sweet dreams or a good morning, afternoon or evening (depending on when you read this).

{ 4 comments… read them below or add one }

1 SommerNyte January 11, 2008 at 11:37 pm

I’ve seen things about Now I Lay Me Down to Sleep, it’s such a special service and they take such gorgeous photos. I hope you never need to call them. (((hugs)))


2 Fertilize Me January 12, 2008 at 6:59 am

This is not morbid, this is reality and I am so glad that you are getting and finding hte support you need/deserve and are gaining knowledge into your families situation! THere is not a day that goes by,that I do not think of your family and say a prayer for yall


3 Mary Fran January 12, 2008 at 6:00 pm


I stumbled on to your blog…I also live in Chicago (Wheaton) and have twins with congenital heart defects. Actually I was pregnant with triplets but at around 6 weeks the 3rd baby stopped growing and by 12 weeks it no longer even showed up on the ultrasound. My twins will be 19 in March and my son has endured 3 open heart surgeries and at the beginning the doctors were not sure he would make it. I hope that your outcome with your new little one will be as fortunate as ours. I will be keeping you in my prayers and checking your blogs for updates.

Mary Muir


4 Kristie January 13, 2008 at 11:15 pm

Kathy, I think often of you and your family. As you posted before I just have not stopped to post because I am not sure what to say. As a photographer I was so going to mention NILMDS to you as an option. The photographer that helped to start it lives here in Denver. You continue to amaze me (((HUGS)))


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