What is VACTERL?

20170615_194553-1VACTERL is a word I had never heard until November of 2016. It is a word that changed my family’s life. The diagnosis didn’t come at one time. It came slowly over the course of several days.

VACTERL is an acronym, with each letter representing a different system. It is a rare disorder of birth defects grouped together. Not every child born with this association has every letter. I think the “guidelines” are that if you have 3 or more you qualify. Benjamin was born with each of these letters representing a defect to some degree. Below is what each letter stands for and how in Ben’s body it is represented.

V- Vertebral abnormalities. For Ben that means that he was born with a tethered spinal cord, absent S5 and an absent coccyx.(no tailbone).  He had surgery to release the tethered cord on June 12th.

A- Anal atresia. Ben was born with an imperforate anus. Basically, what should be on the outside didn’t make it out. Part of his very first surgery was to create an ostomy site until he was big enough to have the surgery to correct his imperforate anus. It is looking like that surgery will take place late summer/early fall of 2017.

C- Cardiac. Thankfully, Ben’s cardiac stuff is minor. So minor in fact that both Terrell and I forgot that anything had been affected. (We still can’t seem to remember!) He had a slight murmur at birth, which has since resolved and two small holes. One of which has for sure resolved and the other one we get differing answers about. Either way, it seems as though his heart is in good shape and will stay that way!

T- Tracheoesophageal Fistula. When Benjamin was born, his trachea and esophagus were connected. In that same first surgery that I mentioned above, the surgeon was able to ligate or separate them from each other.

E- Esophageal atresia. Ben was born without his esophagus connected to his stomach. We waited just shy of 3 months for it to be long enough to connect. He has to have dilations or stretchings of his esophagus every few weeks at the repair site, to keep it from narrowing in on itself again. Hopefully not too many more of those! He also has reflux, which is common with babies born with this condition. In the future if his reflux continues to worsen, he may need a surgery to wrap his stomach around his esophagus.

R- Renal. One kidney. Yep, just the one! But it works like a champ. We are very fortunate that him having a single kidney is the worst of his renal anomalies. It could be a much different story and it is for a lot of other families.

L- Limb anomalies. And finally the most visible part of our little man’s condition. He was born with bi-lateral radial dysplasia. Which means that Ben’s radial bones in both of his forearms didn’t develop. He was also born without thumbs. These things may or may not be able to be worked on surgically; time will tell.

VACTERL was a word that overwhelmed me 6 months ago. And if I am being honest, it still does some days. But one thing that I have come to learn is that it is more than just a diagnosis of a medical condition. It is new perspective on life. It is a look into the group of parents whose children weren’t born perfectly healthy. It is a community. VACTERL has been one of the hardest adjustments for our family as we face surgeries, therapy appointments, and decisions that at times feel impossible. And while it has been hard, I believe it has made us better people and better parents. So, while this word, this diagnosis, completely changed our lives nearly 7 months ago, I am realizing it did not change our lives for the worse. It changed our lives for the better!

“You’re the Inspiration”

Over the last few weeks, I have had several people tell me that I inspire them or that I am an inspiration.  That is a humbling compliment! I started to think about what it means to inspire and who in my life inspires me.

My children. Ava, for example is the smartest 5 ( 5 ½ if she’s telling you) year old that I have ever met. She has learned so much about life in the last 6 months and has been willing to do just about anything to help with her brother. Or anything else that I might need. She inspires me to be willing to adapt to new circumstances even if it’s a challenge. She has had a hard time learning to deal with the ups and downs of life, but she is always willing to try. That’s inspiring.

Then there’s Abigail, who is so full of life! She is a tough, independent, sweet, little fireball! She is always ready to laugh and have a good time, but can gauge a situation and administer love and compassion with every piece of her. She keeps us laughing and she inspires me to truly count it all joy. She will stop at random times throughout the day to pray because she feels like she needs to talk to the Lord about something, at 3 years old she inspires me to come to Jesus with all of my needs.

And of course there’s Ben. The little man who has had a big life already and he’s just barely 6 months old. He keeps us on our toes, but is such a sweet, happy baby. He inspires me to keep going. Everyday, no matter what, keep going.

Last but not least is my husband, Terrell. He inspires me in more ways than one. Over the course of our 7 years of marriage I have noticed one constant with him. He is a doer. A giver. He is always putting the needs of others before his. Particularly over the last 6 months I have watched him be and do more than I thought possible. He has learned to fix our girls hair. He has taken on all of the challenges with Ben and encouraged me to take a deep breath as we figure it all out. He has become quite the chef and has learned that he really enjoys it! (That one really started about 2 years ago, with Bliss…thank you, Darie!) He inspires me everyday to be selfless. He has shown me what it means to consider others first. But mostly he has shown me that no matter what comes our way, we’re in this together. He inspires me to be in the moment and to love and give with all that I am.

 

I hope that as we continue to share our story with others, that we do inspire and give hope.