DNR

 

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Trisomy 18 is a terrible disease. It steals children from their parents far before they are ready. It leads to heart problems, airway problems, gastrointestinal problems, neurological problems. It affects every system of the body. It is a nightmare.

There have been so many losses recently. Every time I get on the trisomy boards on Facebook, another sweet angel has left this world. Last night, a sweet trisomy 18 baby boy died. He was 16 months old. He needed emergency surgery, and he did not recover once extubated. Another mother gave birth to twins – one with T18. He did not survive the night. Clara is currently on life support, fighting severe pneumonia. I read these stories, and I want to give up. This disease always wins and it usually seems to win early on in life.

Perhaps the boards has skewed my perception of the syndrome some. Perhaps it has changed the way I felt about James’ path. I thought we would do everything in his best interest to keep him alive, keep him going. Now I realize that what is in his best interest is not what any parent wants to consider – that it might be ok to NOT do everything that we can. As a veterinarian, I always say – just because we can doesn’t mean that we should. How true those words are ringing to me now.

I watch him fight heart failure and a fever and I know that I can’t make him fight his whole life.  I don’t want him to fight his whole life. I don’t want his life to be surgeries and hospitalizations and medications and strangers poking him with needles and IVs and hooking him up to machines. Even if that bought him happy days, would it be worth it? Every trisomy mother has to ask themselves this question and decide. It is a heartrending set of decisions.

The beauty of life is not measured in its length. Not for James. It is for his father and me, as we would love him to stay here with us forever, safely nestled in our arms. But for him, life is moment to moment. We want the moments that he has to be free of as much pain as possible, and for him to be at home with his family – letting his sisters hold him, snuggle him, being there for family reading time at night, having him sleeping next to me at night instead of in an incubator.

It is such a painful decision – choosing hospice, choosing to forego aggressive care, but we genuinely feel like it is the best thing for our sweet boy. If love could fix him, he would be healed one thousand times over, but it can’t. Our love can only guide us to make the decisions that we think are best for him, as utterly gut-wrenching as those decisions are. Our love can witness his little life, cherish it, and when it comes to the end, surround him in his last moments.

My heart is breaking.

 

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4 thoughts on “DNR

  1. May you be comforted in your decisions. They are so difficult, and only you can do what is best for your baby you love so much. I pray for your baby James every day, and that your lives may be made comfortable and easier. You have given him more love than some children receive in an entire life time. May God be with you, and know that many people are thinking about you and praying for you. And as a former NICU and pediatric nurse, I love your baby too.

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  2. Amen! Hospice care is never an easy decision and it’s even more complicated with children. However what you said rings true, quality over quantity! My grandson passed from Trisomy 18 before I was able to hold and snuggle him, he was 105 days old. Due to a health issue my husband couldn’t travel. We finally had everything set up to finally leave Texas and go to California in 3 weeks when that devastating phone call came in. We made emergency arrangements with work and drove 33 hours straight through (we left the following morning). We arrived to find our son and his girlfriend who were both still teenagers distraught after losing their infant son. Their first born who they would never witness so many firsts with! It was unbelievably heartbreaking yet they made one of most difficult decisions and did so without hesitation, they decided for comfort care only! They have been through more in their short lives than most parents will ever go through! I may not have gotten to snuggle Braxton but he carries a huge piece of my heart and always will as my first grandson! He was so loved in his short life and impacted more lives than most people do! God bless you and your family as decide which path to take with James!

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  3. I am holding you all in my heart and while at beach meditated on peace, clarity, strength and comfort during this journey with your sweetest James. May grace surround you…so much love…

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