“It was very dark and quiet that Friday night in our corner room of the NICU. The neonatologist came in to tell me that my newborn’s blood test results were in. Just 3 days prior, I had given birth to a tiny 4 lb. 5 oz little boy we named Alexander. Pregnancy had been pretty typical up until the end when we realized not everything was as it should be. For one thing, he was barely over 4 lbs. at 37 weeks when he was born, so he was unusually small. The doctor and midwife at the hospital swept him away quickly after he was delivered to give him bagged oxygen and suction. As they were bagging him, his tiny body looked so tiny and frail. Praise God, after what seemed like an eternity, they wrapped him in a blanket and handed him to me. He looked at me with wide blue eyes and I just sobbed. In the moments after birth, we started to notice very unusual physical features. His head was shaped a little differently, his ears were very small and low set, and he had an extra thumb on his hand. ‘Did anybody see this?’ I asked. My midwife nodded, and the doctor reassured me that it could be from a totally benign cause. Then they told us that Alex’s blood sugar wasn’t what they’d like it to be and it kept getting lower, so he needed to be transferred to a larger hospital with a NICU.
Alex was born on a Tuesday night and by Friday evening his blood test results came back positive for something I had never heard before. ‘His test results came back positive for Trisomy 18,’ the doctor informed me. He proceeded to explain that Trisomy 18 is almost invariably fatal in the first year, and that less than 10% live to see their first birthday. He also added that those deaths are heavily front-loaded. Meaning most of them die within the first month. ‘If I had to guess, I’d say a week to two weeks.’ Is what he gave Alex for a life expectancy.
Crash. Did you know that when your whole world shatters, it’s like there’s an audible sound that goes along with it? Well I do. Because I’ve heard it. Ryan and I were beside ourselves with devastation. What was worse, the doctor wanted us to go home right away on hospice and enjoy the time we had with Alex. But Alex couldn’t fully feed himself yet. He was on a blood sugar IV, and under a warmer because he couldn’t even maintain his own body temperature. The doctor explained that we needed a feeding plan for him, and that our options were to either give him a non-surgical nasogastric feeding tube (a tiny tube that goes from your nose to your tummy), or to ‘…bottle feed him, breast feed him…Whatever he takes, great. Whatever he doesn’t take, that’s ok too.’ If we had taken that option and gone home right then as was suggested, Alex would have been shaking and lethargic from low blood sugar, and would have eventually starved and dehydrated within a few short days.
For Ryan and me, it was a unanimous no brainer. If Alex was going to die, he at least wasn’t going to die hungry like that. So, we stayed in the hospital to get trained on his feeding tube cares, and to help his blood sugar get stable enough to go home safely. Before the doctor left our room, he mentioned that Alex had a very loud heart murmur and that heart defects were extremely common with Trisomy 18. He explained they don’t do heart surgery on babies with Trisomy 18, so it didn’t matter anyway. At this point, I remember wondering why that was. What exactly was going to take the life of my son? What about Trisomy 18 was so fatal?
I poured myself into research. I read everything I could find about Trisomy 18, and unfortunately everything I read on the internet confirmed what the doctor had told us. However, every once in a while, I’d stumble upon survivors of Trisomy 18. Through Facebook, I reached out to the parents of those survivors and through our conversations, started to realize that maybe there was hope for Alex after all.
In those early NICU days there was a lot of pushing for even basic medical tests. I changed Alex from a ‘Do Not Resuscitate’ (DNR) to a full code, and was met with immediate doctor opposition. A woman neonatologist entered my room after that decision and asked, ‘Are you prepared to take care of someone with an EXTREME disability?’ she asked while practically rolling her eyes. It wasn’t actually a question. It was more of an accusation that we weren’t making the right decision.
Alex turned 3 years old this past December. I’m not even sure how it’s possible that I’m able to say these words. It is a miracle for sure, but also, Alex was fortunate enough to get the medical interventions that he needed to live. He’s had several surgeries and is cared for by a dedicated team of specialists who are committed to treating him the same as any other child without a disability.
As a family we’ve not only adjusted to having a medically complex child, but we’ve adapted like we were meant to do it all along. It didn’t always feel this way though. Coming home with a truckload of medical equipment and feeding our baby with a tube was not exactly what we had written in our birth plan. Did you know that 2-year-old’s love oxygen tanks? I didn’t, but we sure found out. Instead of teaching Daniel to leave his brother alone when he was sleeping, we had to teach him not to disturb basically a hospital’s worth of medical equipment. Funnily enough, Daniel was the one to adjust faster than any of us. Alex’s medical equipment has never been alarming to Daniel, because it’s all he’s ever known for his brother. He accepts him and loves him completely, in the most unconditional way I’ve ever witnessed love. I’m sure our new baby boy due in April will feel the same way, because I have learned that children have the most accepting hearts out of anyone in the world.
Ryan and I’s marriage has actually improved along this journey. You’d think the stress would have put strain on us, and maybe in the beginning it did. But at some point, along the way, we figured out that we were the only two people in our lives that could really relate to each other in this situation. We needed to be on the same team, and somehow our petty problems didn’t seem to matter anymore. Our perspective on love and life and what was important had shifted dramatically.
Obviously, Alex has his share of medical issues and developmental delays. But honestly, when you come from 1 to 2 weeks to live, there’s not a lot of directions to go except up. Every day, every milestone has been some kind of amazing gift that we were told would never happen. Alex started crawling last summer. The kid is all over my house and getting into everything. We had to pad his walking device because he likes to crash into our walls on purpose. He likes the sound. I never thought I could be so happy about my child destroying my house.
These days I dedicate a lot of time to creating awareness about Trisomy 18. The survival rates are changing because parents are finding other parents on social media and we want to be a part of that change. Unfortunately, we have found that not all doctors are receptive to parents pushing for interventions even with growing survivor numbers. So now we continue to fight alongside others to change the world for our children. To spread the message that we so desperately want parents and doctors to hear: ‘There is hope for Trisomy 18.’”
This story was submitted to Love What Matters by Katie Buck of Des Moines, Iowa. Follow her family journey on Facebook here. Submit your story here. For our best stories, subscribe to our free email newsletter.
Read more powerful mothers of children with special needs:
Do you know someone who could benefit from this story? Please SHARE on Facebook or Twitter.