“Are we doing the right thing?”

“Are we doing the right thing?” The question I asked my husband between sobs on our son’s 2nd day of life, which was also his first day in the NICU. 

First day in the NICU

We didn’t know what to expect when we went into the hospital to deliver, after being told constantly that our son probably wouldn’t survive more than a few hours or days due to his diagnosis of trisomy 13.  After Teddy was born doing amazingly well, breathing well on his own, crying and voiding like a normal newborn, interacting with us, and even attempting to take a bottle, we were overjoyed.  We had such a beautiful first day with him, truly soaking in every second. We snuggled all day, holding him so closely, so thankful that we got the chance to meet him. All our family came to see him.  He was so happy, and we were so happy to be with him!

But we knew that if we wanted a chance to get more time together and to watch him grow up, we had to get him medical interventions. Because of the specific heart defect Teddy had, he needed medication (prostaglandins) immediately, and then needed a cardiac stent soon after. Without this, he was guaranteed to pass away within a few days after birth due to the way his circulatory system was set up. We were given an impossible decision: either put our baby through some temporary pain, with hopes that he would get more time with us, or keep him comfortable but knowingly let him pass away at only a few days old, going the rest of our lives knowing that we didn’t fight for him and wondering how long he would have survived. I’m so thankful for my husband, who knew from the start that we needed to fight for Teddy, and who helped encourage me along the way. “Yes, we’re doing the right thing,” he told me, holding me tight. 

Teddy was initially denied admittance into the NICU because his condition was, as the neonatologist put it, “lethal.” We knew that the current data didn’t support this idea, and that many children with trisomy 13 thrive for many years, so we pushed back. We had to advocate strongly for him to get admitted and to receive basic medical care, but we were thankfully able to get him admitted into the NICU. Many people on Teddy’s medical team treated us like we were being selfish or foolish for trying to help our son. When I was talking to Teddy’s NICU nurse about how we were so thankful that he was doing well so far, she actually told me, “Yea, well, lots of trisomy babies have a 48 hour honeymoon phase before they crash.” What an awful thing to say to a grieving and emotional postpartum mom fighting for time with her baby! All the negative comments started getting to me and made me wonder if we were really doing the right thing. And seeing Teddy hooked up to the EKG and oxygen, NG tube in his nose, multiple IVs and monitors going, hearing the softest, saddest little cry coming from him just broke us. He was so happy in our arms just a few hours before. But we had no other option if we wanted a chance to see him grow up. 

It wasn’t an easy journey or an easy choice, but we are so thankful we did fight for him. We were blessed with 11 beautiful months with Teddy. He thankfully spent most of his 11 months comfortably at home with us, after just a couple of initially difficult weeks in the hospital. To the world, 11 months seems very short. And it is. No length of time would have ever been enough for us. But to us, 11 months changed our entire world. 11 months meant getting to watch Teddy grow up, meet milestones, roll over, play with toys, eat by mouth, try new foods, play with our faces, respond to our voices. It meant his big sister getting to love him, play with him, make memories with him. It meant all our closest family and friends coming to visit him and getting to know his sweet personality. It meant endless time outside, which he absolutely loved, going for walks and enjoying cool nights on our couch in the backyard. It meant many parties and holidays together, even some visits to church. It meant getting to see his big, bright smile every time we kissed his cheeks or whenever he heard his sister being silly. It meant watching him gain weight and grow, learn new skills, defy expectations constantly. It meant hundreds of doctors and nurses and techs getting to meet him and be surprised at how big he was and how well he was doing, changing so many hearts. It meant singing, dancing around the house, reading him stories, playing together, and seeing how much he loved being with us. It meant endless cuddles, snuggles in our bed, sweet and precious moments of peace together. We got time and memories, thousands of photos and videos, moments we will treasure forever. Teddy loved life and was such a happy boy, and he changed the lives of everyone who knew him.

I understand that not every family with a child with trisomy 13 or 18 can make the same decision we did, to pursue full interventions. And many children will have a different outcome, even with the best of care. But for us, we are so thankful we made the decision to help Teddy and to fight for time with him. We’re thankful for the many medical professionals and for our family and friends who helped us along the way, thankful to God for blessing him with 11 months of life, and we’re thankful that we can confidently know that, yes, we were “doing the right thing” on that difficult day 2 years ago.