It was 2:30 in the morning, but I couldn’t sleep. I remember it like it was yesterday. After tossing and turning for hours, I did what I knew I probably shouldn’t do. I got out of bed, sat down at our computer desk, pulled up Google, and typed in what I could remember from the hellish conversation that occurred in that dark ultrasound room earlier in the day. I struggled to recall and spell the words Dr. T had spoken to me….
something about her colon
there was a hypo in there
and I knew the word “syndrome” was part of it.
I couldn’t piece together the words, so I finally just typed in the letters I remembered him saying…M.M.I.H.S
“Did you mean Megacystis Microcolon Intestinal Hypoperistalsis Syndrome” popped up at the top of the screen. I wasn’t sure if that was what I meant, but it sounded familiar. And so, my search began.
For hours I sat there, clicking and scrolling, stunned, frozen, and sick to my stomach. I’ll never forget what I found.
“total parenteral nutrition”
“usually fatal within the first year of life”
I even found MMIH described on a website about “ending a wanted pregnancy.”
I thought I might vomit. (A day will come when I will “go there” with my blog. But not today).
My heart hardened, and it was at that moment that I determined my baby would live, for a little while, and then die. I remember calling my mom the next morning to tell her we were going to have a baby for a short time and that we needed to prepare ourselves for the pain that would soon come. I believed every word I read in those outdated, insensitive articles because they were all I had at that point. None of the babies they described had faces. They didn’t say any of their names. They were numbers in some research project. I crawled back in bed, laid awake the rest of the night, and sobbed, and sobbed, and sobbed.
Laura, meet Sarah
I’m kind of a crazy woman when I set my mind on something. My profession fits me and I yearn to learn just as much as I love to teach. From that night on, I resolved to learn everything I could about MMIH before my daughter was born. I was fixated. I knew I only had a few weeks before I would go back to school and become really busy. Soon after that, Belle would be here. My time was limited. What I wanted to know the most, and couldn’t seem to find, was who these kids were. I had read that there were less than 300 cases diagnosed ever, and I had to find some of those cases and know what their lives looked like. I changed my search to include news stories instead of research and definitions and hoped I would find some real families. I stumbled upon an article about a little girl named Ava, obviously stalked her Mom on social media, and sent her a spastic message begging for her to help me. She responded right away and would, over the course of the next month leading up to Belle’s birth, introduce us to the one little thing that changes everything……….HOPE.
On the 12th of August 2016, Sarah wrote the following words to me:
“…I would have wanted to know there is HOPE if I were in your shoes. The stuff on the Internet is very depressing and the outdated stuff is a poor prognosis. But, there have been a lot of advancements in the management and treatment, so don’t give up!!!!”
Sarah befriended me, mentored me (still does), prayed for us, and introduced me to an online support group which would become instrumental in giving us hope. Through the support group, I found more families of children with MMIHS. I heard stories and saw pictures of younger children going to school and eating snow cones, older children going camping with their families, teenagers attending sports events, young adults attending college, and even moms having children…all living with MMIHS. I learned the road wouldn’t be easy. There were also stories and pictures of tubes, and TPN pumps, infections, transplants and lots and lots of hospital stays. However, I quickly learned that those articles I had read that first night were very outdated and could not sign, seal, and deliver my daughter’s destiny. (You’d think as a Christian, I would have known that. My faith is always a work in progress…) It would be a new and difficult road we were about to head down, but it wasn’t hopeless and medical advancements were ever changing and working in Anabelle’s favor. I learned I needed to give God a chance to work out HIS plans for Anabelle’s life, before I determined her path prior to her even being born.
Recording artist Matthew West sings a popular song with the following lyrics:
If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something
When an injustice occurs, we have two options. We can complain about it, or we can do something to change it. I learned that my experience of sitting in front of a computer night after sleepless night, reading outdated, inaccurate horrors of MMIH had been repeated time after time from most all of the families in our support group. Each time one of us was given the diagnosis, we would head to good old “Google” and there our hopes and dreams for our children would be shattered into a million pieces.The time had come to make a change for future families. We knew that the research was outdated and those articles were painting inaccurate pictures of life with MMIH, and it was time to “DO SOMETHING” so that future families wouldn’t go through what we went through. On October 3, 2016, less than a month after we welcomed our rare Anabelle to the world, a family member of one of my fellow and dear MMIH moms, announced that she would be heading up the creation of MMIHS.org to try to change the experience for future families. Instead of whining, Mollie was going to do something.
Not my Idea; Not my Blood, Sweat, and Tears
Here is my disclaimer that I can NOT in ANY WAY take credit for this amazing website. I am promoting the website (and future NONPROFIT) on my blog, but I played an extremely minute role in the creation of the website only by sharing Belle’s story and a few other tips, tricks, and bits of information about our journey with MMIHS. Mollie has blown our minds with her hard work. She has done research, gathered pictures, contacted doctors, and talked to so many families to create this beautiful website. Further, she is now working on turning MMIHS.org into a nonprofit organization that can raise funds for research and awareness. After only four short months, MMIHS.org is already the SIXTH website to come up for any new family who Googles “MMIHS” and it is already referenced on the Genetic and Rare Diseases (GARD) Information Center’s website as a resource and support for families facing the diagnosis. Rather than terrifying new families, it provides support, resources, and hope. It connects new families with veteran families. It replaces isolation and fear with unity and strength. Today is Rare Disease Day, so I am completely honored to introduce anyone who follows Belle’s story to http://www.mmihs.org where you can find loads of information about her rare disease. This website was created by families, for families and medical professionals, and hopefully even researchers. You can click the link to read Anabelle’s Story, as well as the stories of some of her fellow fighters who are part of our MMIHS family.
I want to end this post with a personal (public) shout out to Mollie Caspers. Mollie is the aunt of one of Belle’s MMIH soul sisters, sweet Everly. I’ve never met Mollie in person or even talked to her on the phone, yet she has given us the most amazing gift. I could cry as I write this because of how this complete stranger has done something that I know will impact my daughter’s future. She truly makes me want to be a better human being. So here goes…
I want to start by telling you that there are many days that I only want to talk to my fellow MMIH moms because I’m pretty sure they are the only people in this entire world who understand exactly what I am going through. We have created this bond, and I truly thank the Lord every day for each of them. But you, Mollie, have managed to break into our little family even though you don’t have a child with MMIH. You don’t walk in our shoes everyday. You don’t even live in the same state as your sweet niece battling the disease, and yet, you have done something for us that reaches beyond anything I could have ever imagined someone would do. Rather than cheering us on from the sidelines, you jumped into the game with us. You have literally devoted your life to learning the ins and outs and most intricate details of our children’s care. You have spent countless hours researching every detail of their disease. I’m certain you could (and would!) care for them yourself after all you have learned. You have written articles and letters, gathered pictures, shot videos, and contacted snotty doctors. Most importantly, you have given our children a voice by sharing their stories. Miss Everly is incredibly blessed to have you for her aunt. Your love and devotion for her and your sister Erin are so evident and honestly blows my mind. However, Everly is not the only child you have impacted through your dedication, hard work, and selflessness. You have forever changed the life of all of our children with what you have done at mmihs.org, not to mention the lives of future children and families who will battle this disease. I have no doubt that your efforts will lead to research and probably even new advancements as the medical community is already beginning to sit up and listen about this rare disease that previously seemed so mysterious and forgotten. Thank you Mollie, for investing in my Anabelle’s life, for being an advocate for all of our children, and for giving of yourself to learn about our kids. The ultimate gift, which touches our hearts more than anything is when someone cares enough to learn what we and our children go through each day, and to walk the road alongside of us. If you ever visit PA, I may even trust you to hook up TPN for us after all of the studying you’ve been doing:-)
The future is brighter and more hopeful for those fighting MMIHS because of you. <3
All our Love and Gratitude,
Anabelle and Family
(If you or someone you might know would like to help get involved with MMIHS.org, please feel free to email me at firstname.lastname@example.org or, send a message via the “Get in Touch” tab at mmihs.org)