Meet Rory John

We welcomed Rory John to our family on October 9, 2019. He weighed 6lbs 4oz, measuring 19″ long and was born following an elective induction.

Rory’s Labor and Delivery Timeline

  • 4AM call to come in for induction
  • 4:45AM arrive at hospital
  • 6:30AM 0cm 60% effaced, -3 position
  • 6:30AM started miso
  • 7:45AM inserted balloon
  • 10:30AM ballon out, 4cm dilated
  • 10:40AM started Pitocin

… the rest is a blur and details are already fuzzy…

The Truth About Rory’s Life

I wrote last month about our utter shock and devastation, learning that he was affected by life limiting (terminal) neuromuscular disease, just like his big sister Olivia. There’s still so much to our story to share… but for now, I’ll share with you something that I’ve already written.

Here’s what I shared on Facebook when he was born.

My posts over the past few years about Olivia and genetics and rare disease and child loss and grief are usually far more thought out and “put together” than this will be, but the truth is I’m tired. And everything hurts. My head, my heart, my body. I’m too tired and too sad to be anything but straightforward. So here goes: a very straightforward, mass update for our friends and family.
On Wednesday night Luke and I welcomed our 3rd baby into the world. Rory John.
He is adorable and happy and our hearts as parents are overwhelmed with love. Big sister Gemma is a bit startled by the commotion but over the moon excited about her baby brother.
However, here comes the heartbreaking update. I honestly can’t believe we’re having to share, again.
Immediately after delivery it became clear that Rory is very sick and it’s highly likely he’s also affected by the same form of non-5q SMA as his oldest sister Olivia. This is a very rare form of an already rare neuromuscular disease.
While we’re only 3 days into his journey, we suspect the outcome will be the same as Olivia’s.
Rory’s life will be very short.
We don’t know how long he will be here with us, but we can assure you that every damn minute of every day he‘s here will be spent smothering him with love.
He is so desperately wanted, and so very loved.
To get ahead of a couple questions:
While typical SMA is detectable via genetic testing, the form of the disease affecting our family is not. So we were not able to test for this in utero, and we did not know he was affected until after delivery.
While there are new treatment options for SMA families, the available options (both Spinraza and the new gene therapy) are specifically for children with SMA caused by a SMN1 gene mutation. This is not the form of SMA affecting our family, and therefore not an option. There is currently no treatment or cure that we’re aware of to stop the progression of the disease. And it is a degenerative disease.
I’m just a few days we’ve already been overwhelmed by the the love, support, and help of friends and family. And for all that you’ve done, are doing, and will do – we are so thankful.
And another copy/paste update from what I shared on Facebook after he died.
It breaks our heart to share that Rory John passed away on Friday, November 1.
While small in size, we trust that his purpose on earth was mighty, and it’s safe to say the impact he made in just 3 short weeks was enormous. We are beyond thankful for our family and friends that have lifted us up this past month. For each phone call, visit, meal, delivery, gift, check in, text message, and card. Thank you.
And to every single doctor, nurse, and team member who cared for Rory in the NICU… and to those who helped us bring our little guy home for one final day of hugs and kisses: you’re our heroes.

Rory’s 3 Week Stay on Earth

On the night of his birth, Rory was transferred by ambulance to a local hospital with a level 4 NICU. It’s where we spent 3 months with Olivia in 2016, and where we chose to have Gemma delivered in 2018. The children’s hospital there is incredible, and the NICU is truly one of a kind.

I absolutely hated being back, I couldn’t believe we were reliving this experience with another child. And yet, my walls came down immediately when I walked through those doors. My shoulders relaxed. My heart felt full. Full of love, support, comfort, ease… being back in the NICU we knew so intimately. Rory was in the same “wing” of the NICU, just one door away from where Olivia lived. We had the same attending residents, the same nurses. The RTs welcomed us back with huge hugs and ugly tears. The same receptionist greet us each morning. The security guards at the front of the children’s hospital even remember us both by face and name.

The NICU is such a close part of our family’s story. I absolutely hated that we were back, and at the same time there was no other place I’d rather place by Rory boy for care.

We spent the better part of 3 weeks knowing what his ultimate prognosis would be, and what his life would look like… but nonetheless we held onto a tiny sliver of hope that his story might be different.

We were at an advantage this time around. Luke and me. We knew how to handle the situation. We knew more about our family’s unique genetic situation. We knew what questions to ask, what doctors to insist join his team, what tests to ask for on day one. We wasted no time in seeking answers.

Ultimately Rory confirmed what we already knew. He was loosing strength after just a couple of weeks, and we made the decision to bring him home on hospice.

What an indescribable blessing this was for our family.

His entire care team moved mountains to get him home with just a few days notice. But it happened. He arrived by hospital ambulance transfer and many, many hands. But then, one by one, the medical team left. And we were alone (with a hospice team).

We were able to see him in our home. Our family held him in our living room. Our church community came to meet him and our priest performed a baptism. Luke and I spent time rocking Rory in his nursery, and we snuggled on the couch.

Most importantly for my mama heart, Gemma was able to be big sister in our house. She saw Rory in her space. She showed him all of his things. She helped care for him. We have pictures and videos to remind her forever that her little brother Rory was here. And she knew him.

Rory died at home on November 1, 2019.

And so begins the rest of our life. Without our little guy here beside us.

Our rare disease journey however, is far from over. If ever I could say there’s a silver lining in the life and death of our son, it would be that we are one step closer to discovering an accurate diagnosis for our family.

More on that another day. Until then, know that if you’ve been affected by an undiagnosed rare disease, know that I’m holding you close to my heart today and always.

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