Telling Our Story

I want to share James’ story. I want people to know babies born at 22 weeks 6 days gestation survive and thrive. I’ve wanted to do this for a long time, but recently I met a family who made me realize I can’t wait any longer. I have met many families with premature babies through my work in Early Childhood Intervention. Not too long ago I met a mom who had twins born at 22 weeks and some number of days. They were delivered at the same hospital as James. The doctors knew the correct gestational age of her babies, and they were too early. This hospital, as do many others, has a policy of waiting until 23 weeks gestation before doing any life saving measures on a baby. Twenty-three weeks is commonly thought of as the earliest gestational age that a baby is viable. There are many hospitals that wait until 24 or even 25 weeks gestation to do life saving measures. This mom, who delivered her twin babies at 22 weeks and some days, held her babies until they passed away. Both babies were born breathing and moving. The staff attending their delivery cleaned her babies, wrapped them in blankets, and handed them to mom. They checked for heartbeats every so often, and after about 2 hours both of her babies died. She begged the doctors to do something for her babies and try to save their lives, but they did nothing. Had the doctors attending James birth realized he was 22 weeks and 6 days gestation this would’ve been his story as well. That is a difficult truth to swallow. I understand not every baby born as early as James has the same outcome as him, but it makes me sick to think about the number of babies who aren’t even given a chance. I want the people who make those kind of decisions to see James, and see what is possible. I have to speak up and tell James’ story to honor these babies, and to try and make a difference.

6 thoughts on “Telling Our Story

  1. James is truly a miracle, because of “mistakes” along the way is he with us. How many babies have not had the same chance he has been given? He is truly a gift from God, with a deffinate purpose here on earth. It will be amazing to see that “purpose”. Love, Grandma

    • Deb…..I am so inspired by your story……..the fact that I am able to follow your story is a blessing for me. It inspires me in so many ways. My career path in healthcare is a blessing…….I had always had a love of nursing and thankfully never gave up the license, thus, when the opportunity presented….I was able to seize the moment!….The birth and life your precious little James is beautiful as it recognizes how fragile life is……and the strength necessary to face it. I love you and your family……….One “purpose” is that through your story, I am able to help and serve so many others…..because I am inspired along the way. Healthcare can burn you out…..I continue to serve those in need because of the subtle reminders I take time to notice and develop a strong empathy with…..Thank you.

      • Thank you Peg ! I am so indebted to all nurses and healthcare proffessionals and so thankful that you/they can do what you do. you truly make a huge difference in the lives of so many people. Love ya !!!!

  2. This just isn’t right. I believe with all my heart the each child should be looked at individually. James is such a beautiful little boy and it hurts to know that he wouldn’t have been given a chance to thrive had doctors known his actual gestational age. Well they didn’t (which shows how little they know IMO) and look at him flourish.

    • Thank you Amanda. I agree that it isn’t right. It breaks my heart to think about the babies who aren’t given a chance. I hope his story can help make a difference.

  3. Wow. I had my first pre-term labour scare at 24 weeks with my twins (born at 25 weeks and 5 days), and I remember very clearly the conversation we had with the neonatologist about resuscitation. It was an incredibly difficult decision to make – so many things come into play and all of them will break your heart – and yet, I remember thinking, “at least we made it to viability”. Had we been in your shoes at 22 weeks, I honestly don’t know what we would have done. It was difficult enough in those early weeks to know whether we made the right choice, whether our decision to resuscitate was going to lead to a lifetime of unnecessary suffering for our babies, and that was all without having to go ahead with the knowledge that our decision would have gone against medical advice. That takes a lot of strength and bravery.

    I am so very glad you had the opportunity to make the decision yourselves, and that it worked out so beautifully. I really feel like making choices about resuscitation with very early prems is one of the hardest choices parents have to make – you never know how it will turn out, you either roll the dice or you don’t. My heart breaks for everyone who’s ever had to make that choice, no matter what they chose.

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