wonderfully made: heartbroken

Wednesday, October 14, 2015


Four weeks. I had four short weeks of newborn bliss before being handed my biggest test as a new mom...and a monster of a test, at that. dmariebuchanan@gmail.com Image Map

I wasn't sure I wanted to share this so publicly at first but so far, it has helped to be open with what is happening and I'm hoping I can use this blog as a way to put my worries and fearful thoughts to paper (figuratively) and connect with more people that might experience something similar. 

I'll cut to the chase: we are launching into tests and appointments to determine whether Beau has a genetic mutation that is causing part of his body to grow faster than the other. I first noticed this on the eve of his 4 week birthday and just thought it was cute that one leg was chubbier than the other. After looking further, we could tell his leg and foot were also slightly longer than the other. I innocently googled (as all new moms do) and was met with a slew of articles on something called hemihypertrophy. It's a condition where not only do parts of the body grow faster than the others, but it can affect the organs and sometimes cause abdominal tumors - cancerous in about 6% of cases. 


In just an instant, panic and fear flipped our world upside down. After a tearful night, Mark and I got up early the next day and went to the walk-in clinic at the pediatrician's office, hoping his chubby thigh and long leg and foot were something more 'normal'. Instead, our doctor examined Beau and checked for all of the signs of hemihypertrophy like a swollen tongue or enlarged organs (which he isn't showing signs of at the moment). Our doctor pretty much said he didn't know what to tell us, he hasn't seen this before in his office, and the next step is to meet with a geneticist and/or a pediatric orthopedist to further explore what could be causing the discrepancy in Beau's leg growth. 

Right now, we are waiting. We don't know for sure that he has hemihypertrophy or if it's more or less serious. We are waiting for our referral to go through with the geneticist and we will go from there. We know that whatever "it" is, it isn't considered normal for a 4 week old and it's most likely NOT 'nothing'. We are praying.

Truth be told, it rocked my world. How could this be fair? We JUST got him. We are just getting used to him. I had a great pregnancy, a good delivery, and he is so healthy and happy and a GREAT baby. Four weeks in and it seems like innocence is lost. I've cried so much simply because I can't imagine this sweet little baby being burdened with a lifetime of doctor appointments and surgeries. It's just not right. He's so little! I can't help but think that life as we know it has changed.

In all of this, I can't help but to count myself as lucky. I have moments of feeling sorry for Beau and sorry for ME, but I can't imagine the pain of those who have much more difficult trials ahead of them and those that have struggled and failed to even conceive after many years. Best case scenario - my child has legs of different length, most likely remedied with surgery. So what? He is wonderfully made and greatly loved and we are immeasurably blessed. 

Nevertheless, please keep us in your thoughts and prayers as we embark on this new adventure. Please pray for the doctor's strength and wisdom, our peace and understanding, and the overall health and happiness of this little boy we call Beau. 

xoxo - Diana

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