Seven years ago today our tiny baby boy was delivered. He was having severe heart rate decelerations and my doctor was concerned that he would not continue to recover. The decelerations were becoming more frequent as the day progressed and James was getting tired. His best chance for survival was an emergency C-section, and that’s how our NICU journey began.
James’ delivery that Monday afternoon was able to occur due to an error made by my OBGYN when I was admitted to the hospital five days prior. A simple error that was discovered by James’ nurses during his NICU admission, but one that saved his life. 23 weeks instead of 22 weeks 6 days. One day that meant the difference between comfort care until he passed, and the NICU team attending his birth, ready to perform life saving measures. Even with life saving measures in place there was no guarantee, the odds were stacked hugely against him, but at least there was hope.
Seven years later, James is still Baylor’s only surviving baby delivered at less than 23 weeks gestation. Not because they’ve tried and been unsuccessful, but because they haven’t tried. Baylor, like many hospitals across the country and around the world, has a hard gestational age cut-off. Twenty-three weeks. Babies delivered at less than 23 weeks gestation are provided comfort care only until they pass. We were hopeful that changes were coming last fall, but those hopes were met with disappointment when talks ceased and the gestational age cut-off remained in place.
This has been my ongoing ‘soap-box’ topic since James’ birth. I’m sure many of you have heard all you want to hear about the injustices of gestational age cut-offs. But unless you’ve lived in that place on the edge, you do not fully understand the importance of the issue. I don’t wish for anyone to find out first hand the difference a day can make in the life of a micro-preemie, but families will. Families will be met with complete and utter heartbreak when they are told their 22 week 6 day baby is not viable and is left to die in their arms. Until that no longer happens I will keep sharing James’ story, hoping for change.
We’ve sent letters to NICUs across the country asking for change, but we’ve never sent this type of letter to the NICU where James was delivered. I have wanted to for a long time but couldn’t find the words until now. It was the one place that was too personal and too emotional to approach. I am hopeful the timing is right now and our letter will be received with thoughtful consideration. They truly are rock stars, the best of the best, and have proven they can do it!
Here is a copy of what should be received today by the Medical Director of the NICU.
I’m not sure if you will remember us, but you and your incredible NICU staff took care of our son, James Epps, seven years ago. He was delivered by emergency C-section on August 2, 2010. I know you see many, many babies, so here are a few of his highlights. He was delivered at 22 weeks 6 days, but an error by my OBGYN caused him to be treated like a 23 weeker, and life saving measures were provided to him at our request. He weighed 15 ounces (440 grams) at birth and was 10.5 inches long. He spent 160 days in the care of you and your amazing team.
We are thankful every day for all of the doctors, nurses, and therapists who cared for James. Without all of you, we wouldn’t have our incredible little boy here with us today. We weren’t given a lot of hope for James and what his future would hold when he was born. This is understandable given the incredible odds stacked against him. He had a PDA that had to be surgically closed. He had a perforated bowel that caused a large blue belly, and no treatment could be provided for weeks because he was too sick. He couldn’t oxygenate his blood even on maxed out settings on the oscillator, so Nitric Oxide was offered as a last resort. Thankfully it worked. So many huge hurdles stood in his way, but he fought through all of them.
The journey since leaving the NICU has not been without new hurdles. James had RSV and pneumonia at 2 ½ that caused a huge setback for him. Being intubated for 15 days caused him to lose many motor functions, including sitting, standing, walking, and eating. With therapy he quickly regained most of his motor skills. Feeding was more difficult. He required a g-tube just after his third birthday, but with two months of intensive inpatient feeding therapy at the Kennedy Krieger Institute, he began eating everything by mouth again. He still has his g-tube though, and now we use it for his seizure medication. At 3 ½ he was diagnosed with epilepsy. He’s also been diagnosed with Autism, Asthma, Developmental Disability, and mild Cerebral Palsy.
So many challenges, but that’s not really what I want to tell you about. I want you to know how amazing James is! Truly amazing. James LOVES books. He’s been reading for two years. He is reading and understanding books above his grade level. He started spelling when he was four. He can name and locate all 50 states, and knows most of their capitals. He knows numbers in the millions. He can add fractions. He started teaching himself how to play the piano by ear over a year ago, and started taking lessons a few weeks ago. His piano teacher thinks he has ‘perfect pitch.’ He knows music by Beethoven, Mozart, Brahms, and more. James talks in complex sentences and is starting to hold actual conversations with us. What I love most is the sweet, kind-hearted, loving personality he has. His smile lights up a room. He makes us laugh all the time. He’s not afraid of anything, and surprises me every single day.
James has faced every challenge ever presented to him head-on and always come out on top. I know that isn’t the case for all of the babies you see, but I want you to know that it can and does happen. It truly saddens me that seven years later James is still Baylor’s only surviving 22 weeker. I kept a blog about James for several years. I’ve had many families contact me through the blog and tell me the story of their 22 weeker. Their 22 weeker who was bigger than James, some even born at Baylor, but none given a chance at life.
I’ve seen so many stories on the news and online about tiny babies surviving and thriving. There is a featured video on Baylor’s website about your tiniest surviving preemie. These stories of survival are so inspiring and definitely worthy of celebration. My concern is for another conversation that needs to be happening but isn’t. Baylor’s tiniest surviving preemie was a 25 weeker. I have no doubt that an 11 ounce baby surviving is unbelievably huge and something for your NICU to be very proud of. But that 25 weeker was going to be given a chance at life. What about the babies like James who are born at 22 weeks 6 days, or 22 weeks 5 days? Babies who may be bigger and stronger, but no life saving measures are even discussed for them. Who is talking about these babies?
I know there was a great deal of discussion happening at Baylor until last fall. That conversation needs to be reignited and changes need to be made. Changes are already happening at hospitals across the Dallas/Ft. Worth area, and across the country. Be a leader in that change. Give hope to those families who have none. We all know that gestational age isn’t exact. How can you use that number to determine which babies will die and which babies will be offered a chance at life? You have one of the strongest NICUs anywhere, with an incredible team of doctors, nurses, and therapists. It’s time to push and grow and fight for these babies on the edge of viability.
This little boy with so many odds stacked against him, who was only saved because of an error made by my OBGYN, is blazing a trail. Great things can happen when you push and grow and become even better than before. He is proof, and he came right out of your NICU.
I am happy to share medical records, school records, and any other information about James with you and anyone at Baylor who will listen.
As we celebrate with James today we are hopeful that his story will inspire those who cared for him to see the great potential in these babies born on the edge of viability.