The last thing a parent wants is for something to be "not right" with their child. I know that what we are dealing with is peanuts compared to most health issues out there, but even the tiniest thing can cause a mother worry and grief. When Lauren was twenty months old Cody noticed that her left middle finger looked crooked, like it had been smashed in a door or something. Obviously such an injury could not have missed the Mommy radar, so I had no idea what had happened to it. It didn't seem to hurt her, but it looked strange enough that we thought we should get it checked out.
A few days later we headed to see Dr. Allred, our kindred spirit of a prediatrician. He was completely and utterly perplexed by the condition of her finger. He sent us downstairs for x-rays, and upon review, he could find no mishapening of the actual bone, only of the tissue surrounding the bone. The finger looked crooked from the outside, yet the bone was growing in straight. He took very detailed measurments of the finger, and even called his partner (Dr. Bently) in to look at it. He too was baffled. Never seen anything like it! You know it must be a mystery when two very seasoned physicians don't know what to make of it. Since it didn't seem to cause Lauren any discomfort, Dr. Allred conluded that it was just "one of those things" and that we'd keep an eye on it during her furture check ups.
At her two year physical, he re-evaluated it but still could find no diagnoses. It had grown a little, but so had all of her other fingers. Again, he decided to watch it.
Two weeks ago Lauren started nursing that hand. I noticed she had not been using it as much and I examined the finger closely. It's sudden rise in growth was alarming, so Cody and I decided it was time for Dr. Allred to look at it again, and hopefully refer us to a specialist. Even the nail bed was larger and the pads on the finger looked significantly swollen. Two days later we were in Allred's office for x-rays, and the next afternoon we were up at Primary Children's Hospital for a consult with a renound pediatric orthopedist who specialized in hands.
Lauren sat in Cody's lap and was in and out of sleep for most of the appointment. We'd later find out that she was coming down with strep throat. Her lethargy actually made the consult easier because she wasn't scared and never tried to get up and play. As she snoozed, Dr. Hutchinson was able to fully examine her hand. We were relieved to hear that he had in fact seen this condition before, but frustrated to hear that no two cases were ever the same. He diagnosed her with a condition called macrodactyly. The big finger is growing at an exponential rate, and will grow even bigger in the upcomming years. What's odd though, is that it is very large on one side and that's what's causing the curveture of the finger.
We talked with the doctor for a long time and I was very impressed with the amount of time he spent with us. We weighed pros and cons and pros and cons. Listening to worst case scenarios was causing me a headache and it was hard to make heads or tails of what he was telling us. Because no two cases or causes are the same, it's nearly impossible to know exactly what is causing the overgrowth. Surgery is likely the only way to know for sure, and even then it's completely exploritory and may not give any definite answers. Worst case scenario is that a nerve is causing the problem and that he may have to partially cut off the sensor in that finger. That could or could not cause partial paralysis in that hand. Best case scenario...is there really a best case scenario? No matter what, we are likely looking at more than one surgery in the next few years; possibly several surgeries depending on what they find in the initial one.
Cody and I have been struggling with the decision of what to do. Is this condition life threatening? No. Will it likely affect her quality of life as she gets older? Possibly. It will certainly affect how it makes her feel from a superficial standpoint. Looking ahead to when she is an already self concious teenager, does she really need a deformed hand adding to her woes? This is the kind of thing we wish she could decide for herself. Yeah, we could wait until she is twelve years old or so and let her make the decision then. But doing surgery sooner than later is probably better because she is very young and her body is much more resiliant and forgiving than it will be in a decade from now.
As it stands, we have a surgery date set for April 20th. We will continue to think and pray about it and let the Master Architect guide us to know what is best for our baby girl. Hopefully we make the right decision!
A few days later we headed to see Dr. Allred, our kindred spirit of a prediatrician. He was completely and utterly perplexed by the condition of her finger. He sent us downstairs for x-rays, and upon review, he could find no mishapening of the actual bone, only of the tissue surrounding the bone. The finger looked crooked from the outside, yet the bone was growing in straight. He took very detailed measurments of the finger, and even called his partner (Dr. Bently) in to look at it. He too was baffled. Never seen anything like it! You know it must be a mystery when two very seasoned physicians don't know what to make of it. Since it didn't seem to cause Lauren any discomfort, Dr. Allred conluded that it was just "one of those things" and that we'd keep an eye on it during her furture check ups.
At her two year physical, he re-evaluated it but still could find no diagnoses. It had grown a little, but so had all of her other fingers. Again, he decided to watch it.
Two weeks ago Lauren started nursing that hand. I noticed she had not been using it as much and I examined the finger closely. It's sudden rise in growth was alarming, so Cody and I decided it was time for Dr. Allred to look at it again, and hopefully refer us to a specialist. Even the nail bed was larger and the pads on the finger looked significantly swollen. Two days later we were in Allred's office for x-rays, and the next afternoon we were up at Primary Children's Hospital for a consult with a renound pediatric orthopedist who specialized in hands.
Lauren sat in Cody's lap and was in and out of sleep for most of the appointment. We'd later find out that she was coming down with strep throat. Her lethargy actually made the consult easier because she wasn't scared and never tried to get up and play. As she snoozed, Dr. Hutchinson was able to fully examine her hand. We were relieved to hear that he had in fact seen this condition before, but frustrated to hear that no two cases were ever the same. He diagnosed her with a condition called macrodactyly. The big finger is growing at an exponential rate, and will grow even bigger in the upcomming years. What's odd though, is that it is very large on one side and that's what's causing the curveture of the finger.
We talked with the doctor for a long time and I was very impressed with the amount of time he spent with us. We weighed pros and cons and pros and cons. Listening to worst case scenarios was causing me a headache and it was hard to make heads or tails of what he was telling us. Because no two cases or causes are the same, it's nearly impossible to know exactly what is causing the overgrowth. Surgery is likely the only way to know for sure, and even then it's completely exploritory and may not give any definite answers. Worst case scenario is that a nerve is causing the problem and that he may have to partially cut off the sensor in that finger. That could or could not cause partial paralysis in that hand. Best case scenario...is there really a best case scenario? No matter what, we are likely looking at more than one surgery in the next few years; possibly several surgeries depending on what they find in the initial one.
Cody and I have been struggling with the decision of what to do. Is this condition life threatening? No. Will it likely affect her quality of life as she gets older? Possibly. It will certainly affect how it makes her feel from a superficial standpoint. Looking ahead to when she is an already self concious teenager, does she really need a deformed hand adding to her woes? This is the kind of thing we wish she could decide for herself. Yeah, we could wait until she is twelve years old or so and let her make the decision then. But doing surgery sooner than later is probably better because she is very young and her body is much more resiliant and forgiving than it will be in a decade from now.
As it stands, we have a surgery date set for April 20th. We will continue to think and pray about it and let the Master Architect guide us to know what is best for our baby girl. Hopefully we make the right decision!
6 comments:
I'm so sorry you're going through this. Poor Lauren. I hope they can find what is wrong and fix the problem.
When I saw the picture of her finger I really thought she had smashed it in a door. Wow I am so sorry that you guys are facing this dilemma. What a difficult decision. I hope you can be guided by the spirit in a clear manner so you can know and feel peace with your decision :) Best of luck, and I hope they can figure out how to fix her little finger. She's such a cutie pie.
That is a tough call for sure! Thank goodness it doesn't take away from how adorable she is. If anything you could come up with a really cool story to go along with it. Something Princess of course.
Good luck let me know if you need help if you go through with it.
I am so sorry that you are dealing with this. Watching our kids go through these kind of trials are heart breaking. Prayers for all of you for peace and understanding and with the surgeon that the right decisions can be made! Hugs!
That is crazy! Glad they figured out what it is and what to do about it. It is frustrating not knowing what the problem is! Good luck!
April 20th is a good day for the surgery (it's my birthday!) Ha ha! Little Miss Lauren... she's so cute, and I'm sure everything will work out great. Like you said, our Creator will let you know what is best. I'll keep her in our prayers!
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