Words and images by Maureen Grace
My motherhood story has not been sunshine and rainbows. It’s been filled with things like premature babies, extremely extended hospital stays, life-saving medical interventions, transplants, hoping for a healthy pregnancy, and the hardest thing any parent will ever endure: burying a child.
This story is about Jude. Jude was never supposed to make it past the delivery room. He defied the odds at every turn and made it to three and a half years old, but we weren’t able to do that alone. His extra time with us was given only because of the love of a complete stranger who gave us the gift of life through their own tragedy.
Jude was born eight weeks early, after my water had unexpectedly broken around 18 weeks. After weeks on hospital bed rest, I was told he likely wouldn’t make it out of the delivery room alive as he wasn’t expected to have enough lung tissue to survive. He did survive, but barely. He spent the first 418 days of his life in the NICU, 100% ventilator dependent with a trach on fairly high oxygen settings.
Eventually we took him home with medical equipment, nursing and all. After 6 months of being in and out of the hospital, it became clear that he wasn’t getting better like we expected as he grew, instead he was getting worse and it was no longer safe to keep him at home. He would likely die if we tried. We took him to the hospital, knowing we wouldn’t take him home until we had a plan. Little did we know he wouldn’t come home until 7 months later, with a brand new set of lungs.
Jude and I packed up and moved our lives halfway across the country to Houston, where he was evaluated for a double lung transplant. Three weeks later he was approved to be listed, four weeks after that he was officially waiting for lungs, and five weeks after he was listed, my pager went off with an offer for a donor match for lungs for Jude.
The morning that pager went off, March 5, 2016, was a day full of every range of emotions. I was in shock that the day had come that we were being given a new lease on life, but I knew that chance was given to us only because another parent was living their worst day ever, having to say goodbye to their child. It is very hard to put into words what it feels like to be overjoyed for finally getting the one thing you so desperately need for your child to live, but knowing it comes because someone else’s child has passed.
I know nothing about our donor, except she was a little girl around one year old. I don’t know what caused her to pass, where she was from, her name, or who her parents are, but I can tell you one thing, I love them. I love her parents more than it should be possible to love someone you know nothing about. It speaks volumes to me that in the wake of their tragedy of losing their baby girl, they thought of other families like ours, waiting for a miracle and knowing that she could be their miracle. I know she was a multi-organ donor and that she saved many lives that day.
Organ donation is a hard topic, especially when it deals with children. I know it’s not a decision that’s easy to make for parents as they say goodbye to their babies, but I think the parents that are able to let their children live on in others through organ donation, are so amazing, selfless, and thoughtful in the wake of their own nightmare.
Jude lived another 20 months with those beautiful, amazing lungs. He was able to travel, play, be a kid, trick or treat, and best of all, laugh and blow bubbles with those new lungs. He was able to live outside of a hospital, go on adventures, start to learn how to walk, and have freedom and independence. Life with those lungs was good, better than good, it was astounding. We always knew those lungs wouldn’t give him to us forever, but we were going to enjoy every single day with them, and we did. I was blessed to know not to take a single day for granted.
Last Labor Day, Jude started to get sick and required oxygen for the first time since his transplant, even though we thought it was just a cold. We were worried but we had been through worse before. Except this time, he wasn’t getting better. The cold got worse, which weakened his immune system and allowed pneumonia to grow. He continued to deteriorate at a very rapid pace, and he was intubated and we were sent back to Houston.
Jude’s amazing lungs could do no more and he passed away peacefully in my arms in November, only 6 weeks after being a big brother to his healthy baby sister, Eloise.
His story lives on as we advocate for organ donation and the gift of life. The time we got with those lungs was the most magical time in our lives. Please consider registering to be an organ donor and know how impactful that gift is to those who are in dire need of a life-saving organ, like Jude.
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Maureen is a medical mom to transplant angel, Jude, a bow-loving girl mom to baby girl, Eloise, wife to a bearded giant, and a nonprofit worker in Omaha, Nebraska. She is addicted to Starbucks, telling Jude's story, and advocating for organ donation.