To read the story of our precious Harlynn Renae, start here and follow the "next" links at the end of each post. Thank you for coming and sharing with us in this journey.

Tuesday, June 24, 2014

SLF Stillbirth Summit 2014

I'm not even sure how to write this blog post. There is no sense of organization to my thoughts, I have randomized recall, and as soon as I remember one thing, I forget another. My mind was a bit fried as a result of the last several days. So much so, that when my rechargeable toothbrush started blinking its battery light and I didn't have the charger with me, I thought, "Oh no. I'm going to have to ask the front desk for a toothbrush." can't use a spinny toothbrush unless it spins apparently. *palm/forehead* All I can say is the Stillbirth Summit put on by Star Legacy Foundation, was incredible. Incredible seems hardly large enough a word, but it's the best I can think of for now.

I was a little late in getting my room reservation made, but the hotel was very accommodating, still gave me the group rate, and I think I fared for the better in waiting because I'm sure they ran out of the "block" of rooms, and put me in one they had available - and it was a really nice room. The valet helped me with my luggage after check-in and asked why I was in town. I told him "For the Stillbirth Summit". His demeanor changed immediately - but not in the "oh, she just talked about dead babies" kind of way. He became empathetic and relateable in that very instant. He told me of his wife's two miscarriages many years ago, and the horrible ordeal he had to endure himself to assist her. He told me, through teary eyes, how he wished he had known more back then so he could better help his wife process their loss. He told me it took her years to recover emotionally. He then said, "I can imagine....well, no. I can't imagine. I only know of miscarriage. I cannot imagine how horrible it would be to experience stillbirth." 

You guessed it: the valet made me cry. The summit had not even begun, and there I was shedding tears already. I tell that story, though, so you understand how deeply impacted others are by perinatal loss, and how if you talk to someone long enough, you'll find out they have a story as well. Perinatal loss affects so many people, yet is kept such a hushed secret. I don't understand.

There was a reception in the lobby for those who had arrived that evening. After settling in to my room, I headed over and met a SLF volunteer, and fellow loss mom. I talked with her for quite a while and also talked with the Executive Director of the SLF, Lindsay. After the drive, the day in general, and knowing I had to gear up for an emotionally charged three days, I retired for the evening.

One thing I was looking forward to was a room to myself to sleep so very soundly in. That didn't happen. The first night there was a huge thunderstorm that woke me up, along with the panic-waking of, "Why hasn't Little Man cried?!" Oh...right, he is home with his Daddy. The first day of the summit I woke up a few minutes after 4 a.m. and stayed awake. I will say the lack of sleep over the three days (last two years...) combined with my hearing loss, having to pump every couple of hours, and my incessant need for food really inhibited my focus and ability to absorb everything from each presentation. That said, I still learned so much and was beside myself with both hope and despair. Despair that an event like this should even exist, but hope for the things I heard, because of the people I met, and for the change we were all coming together to advocate for. Preventing stillbirth. Preventing families from losing their babies.

Presentation after presentation, meeting after meeting, I was blown away for so many reasons. Here we had academic, professional researchers in front of us. Having worked in an academia setting (scientific field no less), one word I would not generalize the scientific research population under is "empathetic." I don't say that to be mean, I just have experienced the more analytical, logical, process-minded people tend to be less empathetic than other non-academia fields. However, this group was the exception to the rule. Their compassion, empathy, and motivation to find solutions in research rather than just more funding for notoriety, was astounding. I wanted to put them all in my pocket and bring them home with me. There are things that can be done - there are things being done - with regard to stillbirth and prevention, and these people are so passionate about what they do. I hugged only a couple of them (Hugger alert!), but truly, I adored these people so much. The medical world has a lot to gain by listening to these individuals and their collective research findings. Not only the medical world, but the OB world in general - from expectant mothers to OBs themselves, and everyone in between and beyond. There is power in knowledge, and there is plenty to be educated on with regard to perinatal loss, and the benefits of knowing as much as possible about it before it happens.

Over 2300 stars hung, representing babies lost.
I saw doctors tear up as they spoke with us. These weren't just doctors - some of them had lost a baby as well. These were colleagues in a cause. Those who hadn't experienced loss were still so attuned to the grieving hearts of parents missing their babies. I cannot say enough about these people - these professionals - who contributed to such an encouraging display of educational, concrete material. 

Dr. Ruth Fretts ~ One of my many favorites.
I met Kiley Hanish - the mother who inspired and whose husband produced the Return to Zero movie. She wasn't a Hollywood snob. She was a loss mom, sorting through life without her son. She was one of us. A club member, who would give anything to have the club not exist. I met another loss mom who had a story so similar to my own, I walked away from our conversation thanking God for bringing us together. Knowing you're not alone is such a powerful thing, and having someone share your experience on such a specific level, while completely disheartening to even be true, is also encouraging. There are people who get it. I spent a lot of time with a couple who is from my area locally, and we were all able to laugh and cry together. The community of loss parents is a unique community - it's a diverse group of people. Baby loss is not discriminatory. It can happen to anyone, regardless of socioeconomic status, race, beliefs, geography - no one is immune. As diverse as the loss community is, the common thread of our experiences creates a bond not easily shaken.

Kiley Hanish
They screened the Return to Zero movie. I had not seen it when it aired on Lifetime, because we don't have cable. The first time I watched it, there in that room, I was surrounded by strangers. That fact was intimidating. It was frightening. It was remarkable. There were so many "little" details in the movie that were not little details at all. I was able to relate to and project my own experience into so many pieces of the movie. While it was one of the most difficult films I've ever had to watch, it was one of the most meaningful personal experiences I've ever had. If you can purchase this movie (available on Amazon) and get it in to the hands of your OB & L&D departments at your local hospitals, it may revolutionize the care and attention bereaved families receive post-delivery, and will certainly raise awareness to preventing stillbirth to begin with. Please consider purchasing and donating to your medical facilities!!

Group Photo prior to the RTZ screening
There was a memorial service to close out the summit. Immediately prior to it starting I found myself feeling so angry. In my chair I was thinking, "It was 2013. Not 1913. Harlynn should be here. This summit should not have to happen. Doctors should not be clueless after-the-fact of a stillbirth occurrence, and should be in tune with doing everything they can to prevent it beforehand. Mothers should know it can happen - before finding out only because it happened to them." I find myself congratulating expectant mothers but thinking to myself, "I hope nothing goes wrong for you..." Why are we in an age where things can still go wrong in pregnancy? Where healthy babies die before they have a chance to thrive? And why are we in an age where a mother becomes upset about the death of her child and is offered anti-depressants to quiet her up, rather than any tangible resources for sorting through the grief of the most traumatic experience in her life? 

My anger subsided as the memorial service began, and it was a beautiful tribute to our babies lost. There was a moment where we were asked to close our eyes and visualize a "place". I won't go into what my place was, though it was beautiful and serene, but I will tell you I have never felt a stronger connection with Harlynn than what I felt in that moment. I saw her. She held my hand. She giggled and she held a white tulip. We both wore purple dresses. I met her in that place, and I held my daughter's hand. I wish I could relay the significance - the power - of that moment. I held her hand in the hospital room, but she couldn't hold mine back. There in our purple dresses, she reached for and clasped my hand. I saw her blue eyes and her blonde pigtails and I had time with my daughter. I went from being angry that she died, to being elated to find her, to feeling incredibly sad I had to leave her again. But I'll go back to that place, now that I know to get there. All I have to do is close my eyes.

Afterwards, there was a balloon release. Over 900 balloons were let go to fade away into the heavens with names of and notes to our babies. Watching the blue, pink, and white balloons fill the Minnesota sky that night was humbling. How little we are in such a big world, and how smaller we are still compared to the heaven that awaits us. Our babies wait to meet us there. It was all I could do not to fall in the grass and weep as those balloons were let go. I wanted to tie them all to myself and have them haul me away as high as the heavens would allow. Just let me get a little closer, Harlynn....

I had a crappy initial experience with college, and as a result, my entire college journey was tainted. I wanted it over with as quickly as possible, and chose the degree that would be easiest for me to obtain. The quickly-as-possible part didn't happen, but I got my degree, by george. As much as I loathed every step along the way, I got that degree. Attending this summit had me up in arms to go BACK to school, and get one more - maybe a dozen more - degrees so I can further advance and advocate for the research in the perinatal loss world. Thankfully, there are other ways for me to be involved, and I can help without homework, but for the record - I would do it in an instant if I had to.

Our amazing panel of researchers/presenters at close of day 2
I can't encapsulate my entire summit experience into a single blog post, but I can tell you this: this community of loss families, of researchers, of professionals, and of advocates will stop at nothing to ensure no more families have to endure this pain. As emotionally exhausting an experience I had, I left there feeling encouraged and inspired and absolutely full. 

Please, if you'd like more information on the summit, or how you can be involved - especially if you are in the OB and L&D community - visit Star Legacy Foundation. It's a wealth of information, and is manned by incredible, compassionate people. You won't waste your time for becoming involved with them.

Sherokee Isle - Author of "Empty Arms" which helped us tremendously after losing Harlynn.


  1. What a beautiful, well written, thoughtful testimony of your experience at the Stillbirth Summit. It was an honor to meet you, only briefly, but I am so happy that it had such a powerful impact on you. I hope our paths cross again. Hugs, friend! -Shannon Renfro

    1. Your hug was so very special - right when I needed it, too! Thank you, Shannon, and thank you for being such an integral part of SLF.

  2. I too was amazed at how real "my place" was with my babies. I could see them, feel them, and hear them! I too will visit there often. Thank you for your beautiful reflection on the Stillbirth Summit. I am so happy we (loss parents/families) have each other to lean on in this terrible tragedy.