Thursday, April 21, 2016

Dr. Terri’s Top 3 Resources fom Parents for Neonatal Care Providers Caring for Bereaved Families: How does the Doc know what to say…when there’s nothing left to say?




       I’ve been a Neonatologist now for over 16 year and physician or 22. As a Neonatologist my job is to take care of sick babies. Babies who are premature or born with significant birth defects or breathing problems, some of whom will not survive. It’s a strange place to be in …to know that every day when you walk in to work you will in fact meet someone who was not planning to see you. You will meet someone for whom your very introduction causes tears, fear, and anxiety. It’s a sacred moment and there’s very little time to establish trust. To say you know what..this isn’t what we planned for and I’m so sorry  that we’re here..but you and I we will get through.  I'm not sure how long it will take, but I promise you I will.
            Honestly I never know what I am going to say in those moments…I just trust that the good Lord ordained that very moment and ordered both of our steps for such a time as this. I then slowly exhale, breathe, establish sincere eye contact and speak. I don’t always get it right but I try very hard to not get it wrong! I’m often asked for resources that I lean upon during those moments…..and while there are tons of books written on the subject I have always believed and maintained that parents are in fact are best teachers. Parents who’ve lived and survived the NICU experience, parents who lived and survived the stillborn experience, parents who lived and survived the miscarriage experience. No one knows the words to say quite like them…and sometimes there are no words. So who does the Neonatologist go to when there’s no one left to go too? The parents that’s who!!  Here are my 3 Top picks for resources for bereaved parents. I pray that you dear reader never need  them…but if you find yourself in the still place where you have to say hello and good-bye to your precious one at the same time this is a great place to start.

 

Bridget’s Cradles
 
         I love the ministry of Bridget’s Cradles which was founded by a mother after she lost her own daughter Bridget. At the time Bridget passed she was too small for the hospital blankets and it was difficult for her parents to hold on to her and to love her. Her grandmother was inspired to knit a tiny blanket that she converted into a cradle which fit Bridget perfectly. This allowed her parents to really hold her, to cherish her, to love on her and to have some time for bonding before their good byes. Bridget's Cradles provides hand-made knitted and crocheted cradles to hospitals to offer to families whose babies were born into Heaven in the second trimester of pregnancy. Because babies are so small in weeks 14-26 of pregnancy, traditional blankets do not meet their needs. Bridget's Cradles™ are soft and shaped to bundle the baby in love and designed for families to feel comfortable while holding and bonding with their baby. Cradles can also be used for burial as they provide a nurturing womb-like environment for the baby. Bridget's Cradles supports bereaved families by providing resources and sharing encouragement. Bridget's Cradle raises awareness about pregnancy loss at any stage of pregnancy - from conception to full-term. 1 in 4 pregnancies ends in miscarriage or stillbirth. Yet, the general public often does not talk about it or know what to say, which leaves bereaved parents feeling alone and unsupported. Bridget's Cradles would like to see a movement that changes a generation into one that acknowledges babies in Heaven and supports families through the grieving process.
 
Carly Marie: Project Heal

         This is a beautiful and sacred site dedicated to mothers experiencing loss…at every step of the journey and a direct challenge for mothers to find whatever it is that helps them heal. Is it writing? Is it painting” Is it creating? Is it speaking your child’s name? It’s a space that allows parents to be free in their pain. Free to take their time. And yes Free to Heal.  The founder of the site lost her son to a birth defect related to his brain and multiple other problems. Her words on the opening page of the website I believe speak directly to so many families. “I spent years of my life asking WHY did this have to happen to me, to us? Why did my son have to die? Why did he have to have that condition? Why didn’t I take any photos of him? Why did I not let our daughter see him? Why him? Why? Why? WHY?! Of course asking these questions was only natural, but I became stuck. I felt as though I was drowning. After a longer time than I would probably like to admit, I came to the realization that I will never really know why so many of these things happened or didn’t happen. The why question only ever brings me more pain. Kind of like when you start asking yourself ‘What if?”. We punish ourselves so harshly when we ask ourselves, God or the universe these questions. I often think that the reality of the fact that my son died, was too much for my being to handle and that somewhere deep in my heart if I kept on asking why, I would be able to change the past and fix everything. Somehow I could bring him back. But I can’t. The past is unchangeable. There is nothing we can do about it now. Asking why or what if will only bring more pain. Asking “Why?” put me in a really dark hole and I didn’t emerge from that darkness until I stopped asking Why? and started asking what heals me? What was it that made me feel good? What brought joy to my heart? What lifted my spirits? I channeled my grief into things that made me feel even the slightest bit of happiness. Before too long my whys were turned into amazing wonders. My life became all about love and seeking healing and honoring my precious boy by living a beautiful life for him.


Now I Lay Me Down To Sleep
 
 
            Lastly one of my favorite resources during times like this is the Now I Lay Me Down To Sleep Organization. This is an organization solely supported by volunteer photographers and solely dedicated to bereavement photography. It was started by a mom who had a baby with a lethal condition and she wanted to have beautiful photographs by which to remember him. I am so moved and inspired by the dedication of these photographers to capture these special moments for families. Many of whom for which this will be there only pictures of their little one. These photos speak a thousand word and feelings. Feelings of pain, grief, regret but also pure joy, pure grace and the ability to cherish the moment. I learn something every time and I am reminded not to take these moments with families for granted. These are the lessons the physician, the nurse, the family friend cannot learn from books and these are the lessons that I cherish.  Hopefully they are lessons you dear reader will never need but if you do I hope that you find peace and solace in these sites.