Imagine, if you will, 109 needle pokes, 86 hospital scans, 70 different types of medications, 35 days on respiratory support, 18 blood transfusions, 17 echocardiograms, and one heart transplant. Against all of these, seven-month-old baby Ruby June Cotter and her parents, Ashley and Brian, are finally at their Wading River home, recovering together.
Ruby was born on June 12, 2019 and by September 4 was diagnosed with dilated cardiomyopathy at New York Presbyterian Hospital. A time that should be filled with such hope, welcoming a new child, became the Cotters’ worst nightmare, fear of losing their daughter. Quickly after diagnosis Ruby received a Berlin heart to mechanically support hers, which was failing. Months went by until a Christmas miracle arrived — a heart for Ruby — and on December 22, she underwent a successful heart transplant.
It’s a story that has gone viral. Thanks to a friend of the Cotter family, Angela Albergo Houlihan, the GoFundMe page has raised over $110,000 donated from over 1400 people, across Long Island and in various other states. But the most touching part of this young child’s journey isn’t what others are writing about her, it’s the first-person perspective Instagram account created by her father (@rubyjunecotter). Through the eyes of his daughter, Brian Cotter has become the voice she is still developing. He is telling her story so that one day she can write it herself.
Why did you decide to create the Instagram account?
After Ruby got her Berlin heart, I was in the hospital, reflecting, and I was thinking how could I explain this to Ruby in her future. How do I explain this to people because so many are calling us, texting us, and asking us what was wrong? They were asking for daily updates, so I just decided to make an Instagram account for her and update everybody that way, and I use her voice. Through her Instagram account, we’ve met so many other heart families and I think that’s what really got the attention to her.
Then I started sharing the Instagram post to my Facebook page. Everyone showed up for us. Our entire community of Wading River and Riverhead, then all of Long Island, and then it was people from different states. People just fell in love with her and wanted to contribute and help us.
How did you find hope in such a despairing situation?
We sat at the hospital for a couple of days just crying. It was very stressful and sad. We were behind the curve on what was really going on. The morning the doctors told us she’s going to need a heart transplant, that she wasn’t going to survive on her heart the way it is, that they were going to put in a Berlin heart, I feel like that’s when my wife and I stepped it up. There was no turning back. We needed to be there for her, be strong for her. We decided to pick each other up and take care of her.
How does it feel to have your daughter back home?
It’s incredible. It’s eye-opening to see how important the little things really are. Even down to just changing a diaper, which you don’t think about. She was two-and-a-half months old when we realized something was wrong. This is our first kid; we’re newly married. We were focusing on our child and taking care of her.
Looking back, we didn’t realize how important the little things were. Every moment is precious. It’s a very real possibility to lose a kid. You realize how thankful you are just to smile.
Did this experience connect you to other families with a similar situation?
We’re in close contact with a family that has a three-year old who had a heart transplant when he was around Ruby’s age. Every now and then, when we don’t want to ask a doctor, when we want to talk to a person who’s gone through it, we text or call that particular mother. She’s a good mom so we took her advice.
There are still so many families who live at the hospital. Me and my wife lived in a little hospital room for four months and now that we’re home, it’s great. But we know that people are still living through that. It’s horrible to watch your kid suffer or watch your kid be sedated. You want to hear them make noise and see them smile. And you can’t. It’s torture. On Instagram, I try and share others’ stories. I try to share these other GoFundMe for these families that I talked to and that we will talk to. There’s a whole world out there of children with heart problems.
What’s next in her recovery?
The final piece to her recovery right now is her eating and catching her up physically; laying on her back with the device going through her stomach for three months. Most kids would have been doing tummy time and starting to crawl at her age and we have to catch her up.
What does the future look like?
We don’t live too far into the future. Right now, we go to hospital two days a week, Monday and Friday. So hopefully, the next step is we visit the hospital less. We’re hoping she does well enough where we can go to the city once a week, then once every other week. She’s going to get a modified barium press. They dye food with barium and then watch her swallow through an x-ray and they can tell us if she’s aspirating or not. So, we’re going to do another one of those and hopefully we’ll record her ability to swallow.
The rest is waiting for her to do something incredible with her life. She’ll probably win a Nobel Peace Prize or something. She’s special, she’s got something going on, and she already has a fan club. We’re going to teach her how precious her life is. We’re going to teach how to respect her body and her heart because it was a gift from somebody else.
Keep up to date, donate, or just see something cute at @RubyJuneCotter.