Kambry's Light is a non-profit organization designed to help families whose babies receive a fatal diagnosis. More than an online support, Kambry's Light will provide information, support and physical care from the time of the diagnosis for as long as the families need. This foundation is the vision of Barry and Kimber Tolbert who experienced the loss of their precious daughter, Kambry, in July 2006. Please take a moment to read their story and see the link to the slideshow of Kambry's short but beautiful life. Then, click here to find out how you can help.
When my husband and I first found out at 19 weeks gestation that Kambry had Patau's Syndrome (Trisomy 13) and would not survive long after birth (or even be born alive), there really was no support out there for us. We did find a website that helped, but we both wanted something tangible. To be able to see and hug and touch someone who knew EXACTLY where we were and where we were headed in our journey. There was so much support given to us after our precious, little Kambry had passed away, but where was it before? The 4 1/2 months between finding out her diagnosis and her being born were actually the hardest because we felt so alone with the thoughts of our precious baby girl dieing in our arms.
Sitting in the doctor's office with all of the happy new mommy's and daddy's really got us down. Barry and I would sit in a corner of the office and just hide from everyone. We didn't want anyone to ask us what our nursery theme was or when my baby shower would be or what our baby's name was. We didn't want them to ask because we knew that it would start a flood of tears and emotions that neither of us wanted to put on a stranger who was just asking what should have been a "simple" question for an obviously very pregnant woman. We just felt more alone at those doctor's visits wondering if that was going to be the last time we would see precious Kambry wiggling on the screen...or wiggling at all.
We also noticed in the waiting room where several things to help mommies and daddies care for their baby such as day care center information, breast pump stuff, etc. But what we wanted to read while we were in there were not the milestones that our baby would go through, because we knew there would be no "milestones" (only the ones we were living at that moment) but the milestone of how to make it another day. We wanted and needed very desperately to read on how to make her life the most memorable and meaningful for the short amount of time that God would bless us with her. We wanted information on what we could do and what options we had. We found a lot online, but also know that a lot of parents may not have the same resources to find all the information that we were able to find. (Like infant bereavement photography, hand and foot molds, balloon release for her funeral). When we knew that we had all of these things "ready", I felt more "ready" for the birth of my baby. We weren't able to set up a nursery or get "prepared" so we wanted to do something, and this helped us very much. We want to see an enviornment where this information is given to each family so that they can focus more on enjoying the moments that they have with their precious baby rather than worrying about what they need to do.
Also, Kambry's Light would offer a program called Pregnancy Pals. This would be optional for every family, but if they wanted to, they could have someone who had already experienced a similar loss help them and just be with them and support them through not only the doctor's visits, but also the pregnancy and birth itself. The nurse that was with us when Kambry was born was awesome in the sense that she did SO much for us behind the scenes so that we could just focus on Kambry and the time we had with her. We feel very blessed that our nurse was so giving of her time because that was less stress and worry for us. In fact, she did a lot of things that we didn't even think of in the midst of all the emotions. We want every family to have someone that can be there to do that for them. Someone who knows how that mommy and daddy feel and knows when to step in and when to step out. We know we were fortunate with the nurse we had and we want everyone else to have that too.
Not only do we feel that Kambry's Light could help through the support and knowledge of information, but we feel that forever friendships could be made between moms and dads just in waiting to visit the doctor. How awesome it would have been if we knew we had a place to go where we could talk to people who would always understand... now and after the birth. We would certainly have felt more comfortable and "excited" in a sense that we would be meeting people who understood what it meant to be in the same situation we were in.
We do not want to limit this to families who get a definite fatal diagnosis because we know that there are many times when other prenatal diagnosis could limit the amout of time a baby will survive. We want them to find shelter at Kambry's Light as well because we think they will struggle with a lot of the same thoughts that we did. Will we get the chance to meet our baby? How long with he/she live? How are we going to be able to deal with not being able to do ANYTHING to help our baby?
Our vision is for Kambry's Light to be a place of comfort for parents after a fatal or questionable diagnosis. We want them to go to doctors who support their decision to carry to term without making them feel like they are "wasting medical supplies" or "delaying the inevitable". To have a wealth of information about their babies' specific diagnosis available to them and to find ideas and ways to enjoy and celebrate their baby's life. Every baby is special and their life should cherished no matter how imperfect they may appear to one person. Because to a mommy and daddy, that life is priceless.