With January being TEF/EA awareness month, I figure it’s the perfect time to post these images from our last family visit to the valley. Carla just happens to be a photographer there too, so we swapped family sessions and snapped the day away!
Rowyn, Carla’s little girl, happens to have the same birth defect that my little W has. Not only do they have similar struggles, but they were also born around the same time! While W decided to make an early entrance 9 weeks early, Rowyn was born just a few days after his due date. They were also born with the same type of TEF/EA, Type C, however Rowyn had long gap and W had short gap. So, simply put, they both had two parts to their esophagus, missing the middle part. The top esophagus is essentially a pouch and the bottom esophagus was connected by a fistula to the esophagus. Carla and I even had fairly similar problems during our pregnancies, and both both of us did not find out our kids were sick until they were born – it was just so scary!!!
So what happened after that? Well both kids had life saving surgery. Esophaguses were reconnected shortly after birth, but they may need dilations (which both kids have had), which are day surgeries to stretch the esophagus, get repeated “stickies” where food gets stuck, and with W, his trachea was compromised, hence the breathing issues.
Today they are both doing fairly well. W has had a few more complications, but overall, they are among the best cases out there. W has had multiple dilatations, GERD and gets sick very often. Currently we are trying to figure out what is wrong with his breathing and if tracheomalcia is the cause, and where to go from here. Seeing Rowyn and W hanging out literally makes my day. To know that they have each other to talk about their problems, aches and pains when they get older is just so cool. Our families are bonded through this defect and hanging out is just so easy and fun!
Back to January. Awareness for TEF/EA is so important because without it and funding, these kids wouldn’t be here today. In the past 50 years, they have come along way! Before this, there was not a whole lot to do…it’s scares me to think that W may not have survived back then! Now there are amazing methods and different surgery methods, like the Foker method (not used on W, but a seriously amazing procedure!), which has given these kids such a better chance at life. These kids go through major and minor surgeries, GI studies, endless X-rays, and more, all in a normal day. In Canada, we are lucky, we have most of our costs covered. In places like the US, this is not always the case. TEF/EA along with so many other birth defects (CHD breaks my heart and is a common association with TEF/EA. Wes only has minor spinal associations) are treated in your local children hospital and a huge shout out to the IWK, Sick Kids, and the Boston Childrens Hospital for giving all of these kids a fighting chance. Please keep donating to these wonderful places.
Here are some images from our trip and mostly these two amazing wonder-kids hanging out…plus Ciara. Who is so stinking cute. W eating the skin of an apple here is a big deal. The skin still gets stuck in his oddly formed esophagus. We even had one of my very best friends from Toronto join us for this trip…and she ultimately fell in love with Ciara. But the pics of R & W hugging melt my heart big time! (I may or may not be secretly planning their arranged marriage at 18 LOL)